Dr Dorothy Clift for help with transcribing tape recordings. The ideas and helpful ...... 'This 20 stone miner came charging into the unit furious with his ex-wife.
.
. ':
'.
I NFORMED CONSENT: PROBLEMS OF PARENTAL CONSENT TO PAEDIATRIC CARDIAC SURGERY
Dorothea Priscilla Alderson
V'
In partial submission for PhD examination in sociology, Goldsmiths' College, London University
1
ABSTRACT Informed consent: problems of parental consent to paediatric cardiac surgery. This thesis reviews the development over the last 40 years of medical,
legal, ethical and psychological concepts of informed
consent and then evaluates the abstract theories in relation to the practice of achieving consent to paediatric cardiac surgery. For two years I observed the work of two paediatric cardiology units in the clinics, wards and staff meetings, and interviewed families and staff. kind of surgery, high
risk
Paediatric cardiac surgery is not a typical
involving as it does proxy agreement to very
operations.
Yet
these
characteristics
help
to
illuminate the whole process of achieving informed consent since, because of them, decision making tends to be drawn out.
Extended
discussion reveals the dependent position of patients, the limits to medical knowledge and skill in a developing specialty, and the kinds
of
information concerning surgery which are exchanged
between families and hospital staff. The experience of consent has two maln elements: rationally informed and to feel in voluntary agreement.
to be In order
to explore the duality of this thinking, feeling experience which involves
doubt
sociological relationships.
and
means
trust, of
it
taking
is
necessary
into
account
to
develop
feeling
a and
Concepts of informed consent which concentrate on
reason and exclude feeling are inadequate.
These inadequacies
are seen more clearly when sociology attempts to overcome the split between reason and emotion and to see how they relate.
The
different perspectives, knowledge and values of doctors and of families and how these affect the consent process then become apparent. Influences on the consent process are shown at three levels: the way medical care is organised; the form and content of the information chi ldren,
exchanged;
and
parents and staff.
the
relationships
between
the
Clari fying some of the problems
encountered by famil ies and doctors may help them to approach more nearly to the impossible yet important ideal of informed and voluntary consent.
2
CONTENTS Chapter Acknowledgements
4
Introduction
5
Defining terms
13
2
Voluntary and informed consent
14-
3
Collecting, presenting and interpreting the data
49
4
Two kinds of knowledge and two kinds of inequality
72
5
Outpatient clinics
108
6
The medical background to informed consent
148
7
The inpatient context 1.
The families' experiences
172
8
The inpatient context 2.
The cardiac team
217
9
Recognising trust in informed consent
243
10
Conclusion
268
1
Appendix
280
Medical terms
284
References Table 1.
Paediatric cardiac outpatient records
115
Table 2.
Parents' estimates of their child's
116
attendance at outpatient heart clinics Figure 1.
Plan of the cardiac clinics
118
Figure 2.
Plan of the cardiac conference rooms
150
Figure 3.
The normal head
280
Attached: What the parents think. Survey of the views of parents in the two units
1986
Nursing satisfaction study Survey of the views of paediatric nurses
1986
Care of children who have died at the Brompton Hospital and care of their families Survey of the views of bereaved parents and of the paediatric nurses
1986
3
ACKNOWLEDGEMENTS I am grateful to the hundreds of people who helped in this project, and especially to the children, parents and staff in the two paediatric cardiac units who generously allowed me to observe and talk with them.
It is invidious to mention only a few names
and many people wanted to remain anonymous, yet the help and encouragement of the following people made this project possible, and so I would like to thank: Dr
Elliot
Shinebourne who
planned
the research
project
and
enabled it to be carried out at the Brompton Hospital and shared in the supervision; Dr Philip Rees who arranged access for me to the thoracic unit at . the Hospital for Sick Children, Great Ormond Street; Dr David Silverman who introduced me to sociology, obtained my grant and initially supervised the project; Dr Caroline Ramazanoglu for continuing the supervision; ;
the Economic and Social Science Research Council for granting a collaborative award; Dr Dorothy Clift for help with transcribing tape recordings. The ideas and helpful support of the following people were also of immense benefit: Susan Rees, social worker, Bridget Comer, clinical nurse teacher, Sandra Mattos, senior paediatric registrar, and Paul Highton of the computer department, all at the Brompton Hospital; Janet Ransom and Vic Seidler at Goldsmiths' College; and Pauline Smith and Susan Henson. I also thank the librarians at Goldsmiths' College and at the King's College, Laws Library. Needless to say, the responsibility for what I have written remains my own.
CHAPTER ONE INTRODUCTION
'In our acceptance of medical practice we have accorded doctors the right to inflict pain. Our concern, therefore, has to be to see that { 1 health workers do not inflict pain unnecessarlly; we believe our skills as social scientists make it possible for us to point out the unintended suffering infl icted, suffering which is unrecognised and which may perhaps be unnecessary or avoidable. Our claim { 1 is to be able to observe and analyse such sufferings in dimensions where doctors and nurses are unsighted by virtue of their training. Their gaze is directed to the mysteries of physiology and anatomy { 1. Our gaze has been trained to look at the workings of the mind and of society { 1 to look below the surface of the commonsensical and see the deeper implications.' (Stacey 1979:186-7) A gateway In recent years there has been much public interest in matters such as heart transplantation, drug trials, contraceptives for
minors,
and
the medical
management of cases of child abuse.
the prescription of investigation and
These matters all raise
questions about the consent of the patient, and in some cases of the parents,
to medical
interventions,
benefit of the interventions.
and about the harm or
Beyond the personal dilemmas for
the individuals involved are questions about relations between the medical profession and society, and between the validity of medical knowledge and of patients' and parents' knowledge.
How
much licence do we allow to doctors to decide and act on what they believe to be the best society generally?
interests of their patient or of
Informed consent may be seen as a gateway,
opening or closing medical access to freedom of decision, and so regulat ing the pace of advance in medical knowledge, and authority,
technique
advance which may be gained through harming as
well as benefitting patients. Informed consent is therefore a vitally important issue for individuals and for society.
This thesis aims to explain the
current practice of informed, proxy consent to medical treatment for minors, informed and
and to question how far parents can or should be involved
in decisions about
surgery.
5
their child's heart
A paradox Informed consent to medical treatment is a recent and developing concept, open to many interpretations. its
nature
and
purpose,
in
its
It presents problems 1n
practical
achievement
and
assessmen t .
Philosophers discuss consent as a set of abstract
principles.
Lawyers use consent as a practical means to defend
doctors against litigation, and patients against abuse.
Doctors
vary from considering consent to be a part of excellent and courteous medical practice, to dismissing it as an unnecessary and empty formality,
or an
measure
the
evidence
of
impossible
ideal.
comprehension
and
informed patients wi th very variable results.
Psychologists satisfaction
of
Some parents see
proxy consent as a right, or as a painful or bewildering duty, some see it as a means of supporting, or else of attempting to challenge, medical decisions. Informed consent, as Kaufman has shown
If one
introduced
or two medical observers were present. and,
if
the
child
~eemed
calm.
they were
permission
requested for visiting doctors to examine the child.
was
They would
establish eye contact and talk reassuringly. learning relational as well as technical skills.
These observers were used to help
children by playing and talking with them or by taking older ones for an ECG so that the adults could discuss serious risks more frankly and then decide how to inform the child.
The consultant
would sit talking with the family (not impatiently holding the door
handle>
until
issues
appeared
to
have
been
clearly
understood and agreed, and then might shake hands with them and would show the family out.
Strong (1976) has noted how behaviour
1n clinics, such as ignoring quest ions,
- 120 -
is accepted 1n doctors
but would be unacceptable in pat ients.
Some cl inics reduced
disparities between medical and patient behaviour, doctors were more attentive, and patients more assertive when they were treatd wi th respect. Participation tended to be encouraged in CH clinics, less so at HH where the author it ies were concerned about problems and commissioned
two nursing reviews of
the clinics.
The reviews
reported that patients had to wait for very long periods and 'became agitated when waiting and at times very angry [ 1 The nurses are subjected to a considerable amount of hostile cri t ic ism amount ing at times to verbal abuse, as they are unable to offer any solution to the patients' problems, this is particularly difficult for the nurses to accept. Nurses are responsible for creating a comfortable environment [ 1 and an eff ic ient system [ ] ensur ing that [patients'] physical needs are met and giving appropriate information [ ] about investigations, treatments and future appointments [ ]. Basic nursing sk ills include [ ] developing a rapport with pat ients.' implied more respect for medical notes than for parents' reports.
This father had
waited 2" hours, again the implication being that medical time was more important than his own. Parents spoke of the difficulty of interrupting the medical One mother f low when a group of doctors were being taught. expressed a common view. 'You don't get the attention you need. You can feel quite flattened if you go out and you haven't been able to ask the quest ions you wanted to. And if you do ask, they sort of get away with it and dismiss it.' When fami lies explained their main concerns in their own terms, as Emma did, this could involve revealing doubt, ignorance, fear or discomfort and ask ing for reassurance.
People were less
likely to reveal this kind of vulnerability in a busy, impersonal crowd. HH consultations tended not to be a continuous whole from the family's point of view.
There was no obvious person, such as a
children's nurse, to help, as the following example suggests.
The
chair at the head of the second couch was fully used as the only place for families to put clothes and bags, as well as the only place a parent could sit to wait, to comfort the child and to be
- 124- -
facing the examining doctor who always worked towards the window. During two consecutive clinics I observed parents of ten patients in turn stand throughout their consultation by the doors, holding their bags, behind the doctors and therefore blocked off from the chi ld and the medical conversat ions.
The reason for the change
was that the guage which measures blood pressure : left on the chair.
:."'. was
None of the staff seemed to notice the box or
how it influenced the consultations and these families seemed not to have the confidence to move it or even to ask for permission to do so. If families felt intimidated in very small matters, how confident would they feel about questioning more important issues such as treatment decisions? Observing doctors sometimes
each
in turn reported conditions and
treatments which they suspected to be correct and
finally the consultant would tell them the actual condition and treatment and then turn to talk to the parents.
This teaching
method had the advantage that parents were able to hear much about the heart condi t ion and had time to think about their quest ions. of
Yet some parents and chi ldren found the medical talk
their own and other cases confusing and alarming.
Some
appeared to be uncertain whether to show interest or to seem not to be eavesdropping;
the unusual posl t ion of being a central
topiC of conversation while being ignored can be dlff icul t to manage.
They were left in mount ing suspense, somet imes hearing
unfounded suggestions, like the mother whose first baby had died of a heart defect and her second had had heart surgery. doctors standing talking behind her,
The
talking about her third
baby, did not see her crying; she turned very white and could not stand when finally told that her normal. that
third daughter's heart was
Families coming to terms with. the shock of realising
the child has a heart condition,
or worrying that more
surgery may be due, heard their profound individual eKperience discussed in impersonal terms of syndromes and percentage risks. The use of technology could heighten anXiety.
For example,
one mother brought three small children to be examined after her eldest child had suddenly died because of a ruptured aneurism on her heart. hospital
The whole family was very disturbed; was
associated
with
the
- 125 -
child's
recent
a visi t to death
in
hospital.
Several doctors carefully examined the children and
decided to echo them, partly as a further check, partly to give added reassurance.
The family waited unt 11 mid-afternoon in a
dark, narrow corridor outside the echo room with its chained and padlocked door, and wi th nothing to occupy the rest less, noisy, hungry children.
I waited for two hours with them, as the mother
talked about the lack of care and consideration that she felt her She spoke of confusing advice from daughter had received. doctors about whether or not to have echoes or catheterisationst In her bewilderment and distress, she for her other children. seemed to need someone who could listen to her for a long time, before she could return to a mental state capable of accepting medical
The family seemed so frightened by the
information.
technology and seeming
lack
of
care as
to be
incapable of
accepting overt messages of reassurance. 4.
Relation between the clinic types and informed consent
Examples of contrasting clinic practices have been selected in order to show how they appear to be associated with the form and content of discussion between doctors and families. quiet, chi ld
sympathet ic consultat ion, as
a
person
A leisurely,
demonstrating concern for the
implicitly and
explicitly
through
clinic
pract ices is likely to encourage fami lies to talk about their concerns and
to gain growing awareness.
Patlents can help
doctors to provide the information families need, in a form they can understand.
Patients who feel able to question and interrupt
can slow down the flow of information to a pace at which they can assimilate and respond to it.
One father said,
'Although they make an attempt to explain in lay terms - but then they start using medical terms - I ike 'constrict ion' , 'ligation', 'granulation of the wound'. If they use one word you're a little unsure about, your mind pauses at that one. You reflect. You try and work out what that one means. They gallop on at a racy pace and you miss the next part. If they s low down to draw, you can keep up with them. ' Doctors concerned wi th paediatric aspects of care showed much interest in informing parents with diagrams and coloured sheets, so
that
from
explanation
they
- 126 -
could
quickly
progress
to
Wi thout visual aids, verbal explanations of visual discussion. concepts could be very confusing. For example: And there's a thickening of the valve. Oh, I thought it was a narrowing. Well, that's the same thing.
Doctor: Mother: Doctor:
One mother described the effect of the doctor's pace and manner on her ability to comprehend. 'I don't feel daft when I ask Dr X a question. He seems to realise you don't understand at first but he doesn't mind repeat ing at all. He has that nice nature, whereas with Dr Y, I said, "Yes, I understand," so that I wouldn't look a fool, although 1 only understood a bit. When you're worried it goes in one ear and out the other, unless it's me. I am thick. Dr Y said to ask as much as I like but sometimes it's his attitude, always seeming busy, rush, rush, rush. He spoke very fast. I think it's not what they say but the way they say it. If they seem nice and relaxed you can take in more. You've got time to think. If they speak slowly to you they seem as if they're more concerned.' Consent wi thin the fuller discussion in paediatric based clinics is liable to be more informed and also more voluntary, because causes of unwi llingness such as misunderstanding or a specific
fear
can
be
addressed.
Parents
in
these
clinics
expressed more reservations about the risks of surgery and tended to
question
information. surgery
is
the
need
for
it
instead
of
quietly
accepting
Entirely voluntary, free and eager consent to heart impossiblej
the
experience
is
not
pleasant
patients are already under duress from the dangers of condition. concept.
and their
Voluntariness in relation to surgery is a relative Yet it is a state in which the pat ients (or parents)
can choose that agreeing to surgery is preferable to refusing it. It
is also a state of being conscious of unavoidable duress
exerted by the nature of
the
illness or defect but not of
avoidable duress, such as from hospital staff.
Voluntariness is
encouraged by informed and sympathet ic persuas ion rather than coercion, by allowing the patient to protest and resist and by responding with respect and concern. protesting,
Partly by questioning and
Emma was able to use the doctor's knowledge as a
resource and to obtain practical help for her nausea and for her anxiety about her condition, treatment, diet, and perhaps her
- 127 -
self-identity generally, as well as her dignity as a patient. Consul tents' use of clinic time and resources seemed to be strongly influenced by their beliefs about the best means of practising paediatric cardiology, whether to put most emphasis on cardiac
expertise or
on communication
with
families.
Both
activities were highly valued and they are not wholly separable, but when these concerns competed for time, doctors' priorities Consul tants' priori ties seemed to influence became apparent. their selection of the form and content of the information discussed, and the degree to which they considered it expedient to keep to technical information or to share personal awareness wi th famil ies. 5. Outpatient clinic examples of encounters Extracts of transcripts of cllnic sessions will now be used to give examples of kinds of information eXChanged and some of the ways in which the process of achieving informed consent becomes easier
or
more
complicated.
Clinics
with
an
emphasis
on
cardiology might be expected to give more standard information, than wider ranging paediatric based clinics.
Yet even in cardiac
based clinics, parents were informed about similar operations in widely varying ways.
The examples are all from one cardiac
centred cliniC, partly to indicate the range of cases and the pressure to work quickly.
The clinic had 14 patients, an average
number for this doctor's clinics.
As it is only possible to look
in detail at a few out of hundreds of pat ients, I have used the case study method of using examples to show how they illustrate themes in the consent process. Literature about consent often implies that it is possible for doctors
to give
stages.
This clinic illustrates difficulties in achieving this.
Each
family's
fragmented.
patients
responses
standard
varied,
information
and
in systematic
the consent
process was
Children might attend many clinics with different
facets of the case discussed each time.
No one could ensure that
parents understood and recalled each stage, so doctors tended to rely on parents to indicate what they wanted to know by asking questions.
A consul tant who read this chapter in draft said that it
- 128 -
expected too much of the c1 inie.
Parents could be more fully
informed and asked for their consent later, when doctors had more precise information. was:
A usual pattern of non-emergency treatment
clinic,
admission for
the
leading
about
data
admission for surgery.
to
catheterisation., a
firm
medical
meeting
about
surgery,
decision
There were many other issues for the
consultant to attend to and one person could not take on all the responsibility for informing and discussing the many serious problems with families. Yet by the time a child was admitted for surgery, parents tended to feel that it was too late to demur, also that they had wanted information earlier to help to prepare the family for surgery.
Somet imes they had weeks or months to
wait and wonder before admission.
Later chapters show that gaps
in information were not routinely filled.
The clinic might also
be the only time at HH when parents talked wi th a consul tant before surgery.
Someone knowledgeable, such as a cardio-thoracic
children's nurse or a junior doctor, for families to talk with could greatly help the families and reduce the consultant's work. This account of a clinic is about people attempting impossibly hard decisions, often wi thin unavoidably adverse circumstances. It
is
very
difficult
to write about
implying cri t icism which I do not everyone
was
striving
to
do
such
intend,
their
best
problems without since I for
Clarifying some of the problems may be helpful.
the
fel t
that
children.
The five cases
in the clinic will now be reviewed. 1 Joseph
3 years, first clinic patient, 10.55-11.25am
Atrioventricular septal defect,! tetralogy of Fallot,. and Down's syndrome. Joseph came for a postoperative check three weeks after his emergency shunt! operation.
Before surgery, he had collapsed at
home because of lack of oxygen, and had suffered brain damage. During an interview in the ward,
his mother told me that she
trusted the consultant's advice about heart surgery: 'He advised that if it could be corrected simply and would improve his day-to-day life one would obviously have it done, but one wouldn't necessarily go into open-heart surgery straight away. [ ] I understood the point he was making and I dreaded coming down to a moral decision of whether to treat a child because of a [mental] handicap so I - 129 -
didn't think about it. I don't know how my husband felt. I felt if a decision had to be made I would leave it to him. [] We never ask about what might happen - we thought when the time came they'd tell us the possibilities.[] The consultants both told us that knowing the future was a matter of seeing visit by visit.' Joseph's mother was most concerned about improving the quality of his present life. From what she told me, her main concern in the c1 inic
was I ikely to be: to learn how to prevent another sudden
collapse; and to ask about, but not try to influence, decisions about further surgery.
She asked what correcting the defects
would involve. Doctor: It's an enormously complicated process to put a patch in to close those holes. It is so difficult that one sometimes wonders whether a shunt as he has had, and another one on the other side at a later date if necessary, might not be a better option than total correction. And one's not obliged to do that in view of the - um .•. Mother: Does correct! ve surgery sort it out - if it's successful? 12.: Well it sorts out his heart, if his heart is his main problem. M: Mm. If it's successsful, usually is it? )2: Well. •• you may not get perfect anatomical resul ts. You often don't, even when the child survives because with one big common valve, you have to make two out of it ... M: Yes? 12.: [Explains about making new valves, then adds] It's still not a normal valve [ ] The problem is that sometimes the valve leaks a bit then you have to start trying to prevent the leak and there may not be enough actual val ve to give you a perfect result. You may get a very good result, maybe ..• [ ] Against all that background one wonders .•. I mean one can go on for 30 or 40 years having shunts if they are good and work. Joseph's mother, Mrs
Rodin~
then asked about Ii fe expectancy, and
the doctor replied with several qualifications that with shunts, 'his life expectancy isn't badly affected. [ ] It's not going to be much worse because we don't •.• '
Again he paused as if not
wishing to go into further detail unless asked to.
Mrs Rodin moved back from the future to the present with several questions about how she should care for Joseph at home. This example illustrates the problems of dealing with masses of
information which,
inevitably
in the
limited time of
c1 inic, like icebergs, remain largely submerged.
- 130 -
the
Only the tips
are seen in hi n t s and a 11 us ions. affect
How surgery ded s ions will
the length and quality of Joseph's life,
what
is an
acceptable level of mortality and morbidity risk now and in the future, each issue involves numerous facts and opinions which are only hinted at.
For example, ' i f his heart is his main problem'
suggests a comparison of the relative disadvantages of Down's syndrome and heart defects but this is not developed. There are several explored. described
possible reasons why
There were the effects of earlier. This clinic was
issues were not
clinic organisation only one of many
opportunities for Joseph's mother to talk with doctors. reason was concern with the present.
Another
Parents frequently spoke of
taking one day at a time, having enough to cope with now without thinking about the future, fearing and putting off bad news, and so on.
When the doctor replied about I He span, 'It's not going
to be so much worse because we don't ... ' 'much worse than what?' present symptoms.
instead of asking
Mrs Rodin immediately returned to the
Parents wanted a well child with as 11 tt Ie
treatment as possiblej they consented to surgery when the child was clearly ill or when doctors convinced them with clear and emphatic
warning
that
surgery
was
necessary,
but
they
were
unlikely to request it otherwise. A second reason which could enable yet limit discussion was 'obligations'.
Adults in the units seemed to think they had a
duty to raise certain issues in fairness to the chi ld but not necessarily to develop them.
They ticked off a list of topics as
a way of fulfilling obligations, if only to be able to dismiss the topic because no response could be taken as understanding and agreement. remarks:
For example,
the consul tent paused during several
'one's not obliged to do that in view of ••. ' j life
expectancy would not be 'much worse because we don't ••• '; but he was not direct ly asked to finish them.
Whereas when he said,
'you have to make two valves ..• ', Mrs Rodin prompted 'yes?' and he continued to explain. Obviously most conversations are channelled by these kinds of cues and checks to filter out undue elaboration.
The process was
complicated in the clinics if parents held back questions in order to avoid looking ignorant or seeming to take too much time.
- 131 -
For
example,
one
'That's great'.
mother
agreed
to
proposed
treatment
with,
Because she had looked puzzled, when the doctors
left I asked her what she had understood and she replied,
'I
haven't a clue, fill me in.' The doctor waited each time for Joseph's mother to intitiate topics and in replying he selected answers to reassure her about the condition and thereby to warn her against surgery: a sudden attack
was unlikely,
the shunt was working well
and should
prevent problems, and so on. The doctor did not mention precise ages of life expectancy. He hinted that the risk was high, ('even if the child survives'), without giving a specific risk, but at the same time he steered a balance between suggesting that the task was difficult yet not impossible for the surgeon.
As in
later examples, the child's relative good health is emphasised as reducing the need to operate.
The current limitations of surgery
tend to be presented in ways which stress high aims, difficult achievements and perfectionism: 'you may get a very good result' although maybe not a 'perfect' one. between
discouraging
requests
There is a careful balance
for
surgery
and
sustaining
confidence generally in surgical excellence. Some parents were uncertain how much they ought to know.
As
one mother said, 'The doctors haven't talked to us so much this time. I think they think we should know it all by now. I feel I know all I want to for myself but, er, whether I should know more I - I don't think it's down to me to know exactly what artery goes where and - in one sense you need to know enough not to be unnerved about it but you don't need to know more than is absolutely necessary. Some people do, some don't, we're all different.' Whereas the mother implied her duty to know, a father who was a soliel tor talked about the doctors' duty to inform. starting with
the
relationships,
he
difficulty
of
free
discussion
Although in
unequal
implied that doctors should assess parents'
competence and avoid confusing them. 'Getting the answers you require in hospital is difficult. [ ] You are subject to rules and regulations and methods of behaviour and an environment which are entirely unfamiliar, so you feel disquiet, dlsorientated, you never feel on an equal foot ing wi th doctors. [ ] They are very forthcoming here about what they are going to do. [1 What you want to - 132 -
know really is: What is the problem? What's the diagnosis? What's the remedy? What are the chances compared with other surgical procedures? What are the chances of success, the chances of remedying the defect? What are the risks attendant on it? How serious is the defect? What would be the consequences if it wasn't remedied? And then any reasonable person can make a judgement taking the risk against the benefit. In my son's case there's no problem. He would have died if he hadn't had surgery, so whatever the risk it was worth I don't think you want to know about the having a crack. techniques they use or the plastic tubing or whatever it is, because that's just mechanics. I think they have an obligation to give you sufficient detail to enable you to understand. [ 1 Not because it would make you withhold consent, but I think it helps you to prepare yourself for the possibi 11 ty of harm. [ ] I suppose there is a point at which the risk is so slight you wouldn't need to know, I'm not sure whether two in a thousand is sufficiently small. It's difficult, you have to rely on the doctor's judgement to some extent. You don't want so much information you're confused and a decision is impossible, but you want as much informat ion as you can reasonably be expected to take in. I wouldn't have the presumpt ion to argue wi th consul tants about their choice of an operation but I wanted to know that the risk was about 15% and that they felt that my son was a slightly better bet,' and as they practise this new operation the chances are getting better all the time. I'm glad we knew that this is the best place. We were told the record in another unit is 25-30% mortality. It meant that if John died, which he nearly did, at least we would have known he had had the best chance.' His wi fe added: 'When you go away and think about it and talk about it, that's when you think of questions to ask.' A mother who had been a nurse said: 'I don't think you know the key questions at first. I think you start picking up I itt Ie bits of information from each clinic and reading books and talking to other parents, you suddenly real ise how things start fall ing into place, you begin to build up a pattern about your own child and then you can sort of start f 1111ng in the gaps or reinforce things when you go back to the clinic. You begin to understand what the doctor is saying. It does help if you can take home a diagram or something written about the defect to help you to sort out what they were saying.' So parents relied on doctors to take a main share in deciding how much information to give and when. A further means of limiting discussion may be intuition, that - 133 -
doctors
and
parents sense agreement which makes discussion Joseph's mother had spoken of reluctance to be
unnecessary. involved in major decisions about surgery.
The question remains
whether she would have responded differently if she had been more informed about the risks and benefits of surgery options.
At the
time there was a debate in the Lancet about withholding surgery from Down's chi ldren which was offered to other chi ldren. (Bull However the doctor seemed to be et ali Menahemj Wilson 1985) tell ing her what she wanted to know.
In the words of another
consultant on high risk surgery for Down's children: 'Vou can sense out the decision people have made and you make the decision for them you feel they want you to make. [] When you start talking and they start fidgeting you can sense that they don't want surgery.' Shanta
5 years
Fifth clinic patient, 12.15-12.35am
Tetralogy of FalloH and atrio-ventricular septal defect,' wi th other cardiac anomolies. Shanta has defects similar to Joseph's but she does not have Down's syndrome.
The consultant told the other doctors, 'We had
a lot of discussion, [at the medical meet ing] it wi 11 be very difficult surgery.'
When the family arrived he told the parents
that Shanta was growing too big for her shunt. I think we should put her name down for a repeated catheter test ••. um .•. to look very hard at er ... what we should do... The opt ions are: easy - do the shunt on the other side, low risk, easy to do, of course that doesn't correct her heart. Or we have to think about, um, a bigger corrective operation, sort of open heart surgery, which is a big operation, um... which would obviously have more associated risk... On the other hand I think we need to know exactly what her heart is like now, so that we can then discuss with the - what we think is her best bet. [He continued talking about the need for more accurate information, implying although not specifying risk and at the same time reassuring the parents about Shanta's present condition.] E: What does the open-heart consist of? What would you do? 12.: Um. •• she has a big hole in the middle wi th a common valve - with a hole above It and below it. So the surgeon puts two patches, one above and one below like that (demonstrates wi th a gesture) to block off the holes. We would then hope at that time that the, er, valve that was there works properly on both sides, because you've got a common va 1ve and you make two out of them. We 11 perhaps we'd - and then the area that was narrowed would have to be opened up and probably a gusset put in to let it out - to
}L:
- 134 -
make it bigger so that the blood can go through to the lungs. So it's essentially - and then you take down the shunt she's already had. That's easy, you just tie it off. But it's - tricky, a big operation ... We'd have to be certain it was the right thing to do. [He explains that she may need another shunt instead of corrective surgery. The catheter was] to see if it looks technically er - to be reasonable. [He starts teaching other doctors, indirectly warning the family that risk was very high in comparison wi th other cases, by saying1 This 11 tt Ie girl is very complex, like the child we sawearlier but even more complex because [and he 1ists the complications. Eventually he turns back to the parents to say they would do a repeat catheter1 and when we know the facts sit down with you and tal k through what's the best thing to do. M: Do you know when you'll do the catheter? [After talking about the timing the family leave.] Again, information is presented in order to persuade parents to agree, in this case to investigations, and to be open-minded Twice the explanations end in a short about later decisions. pause (-) as if the doctor began rapidly to explain medical concepts and then sensed a gap between what he was describing and the parents' level of medical understanding which seemed to him impossible to bridge so that he gave up the attempt and moved on to the next comment.
It is easier to assimilate a group of new
concepts, discuss and recall them when they are given in a chain of quest ions and answers instead of a single speech, when new ideas are bui I t
onto ones already understood,
clarified in a drawing, questions.
when they are
and when parents are invited to ask
That the parents did not reply to the medical account
of surgery may partly be attributed to the omision of these practices. The parents are advised to talk after the' catheterisation. Specific risks are not mentioned. technical
and
nonaffective, skill
abstract
concept.
It
instrumental language,
('tricky',
reasoning,
Risk remains a vague and also
'it's
a
big
is
alluded
to
in
as a challenge to medical
operation'>
and
to
medical
('we'd have to be certain') but not a shared anxiety
as suggested by the doctor who spoke of 'cold feet'. Although families cannot make expert, about
surgery,
when
explaining decisions
- 135 -
technical decisions doctors
can
convey
either a sense of sharing some responsibility with families or of shouldering the whole decision and just informing them of it. Shanta's case is an example of formal encouragement to families to trust expert medical competence which, as discussed earlier, can
have
the
effect
of
professionals and anxious
putting
a
barrier
lay people.
An
between
rational
informal
approach
attempts to overcome the barrier by admitting shared anxiety and thereby making parents more responsible in consciously agreeing to high risks. When what is being risked, the child's life or health and the possible effects on the family, is not mentioned, risk remains an abstraction.
By definition 'risk'
describes
acHvi ty which is partly uncertain and uncontrollable, yet here it is def ined mainly in terms of certainty,
'when we know the
facts', and of firm responSible management and competence, 'easy' is said twice whereas 'tricky' hardly suggests serious perhaps fatal difficulty.
The doctor hints at the limits of medical
knowledge and ability to treat Shanta's problem, explicitly by stressing the complexity and need for more tests, and implicitly by phrases such as 'her best bet' Yet the overall impression given
is
of
confidence
to
meet
the
challenge.
uncertainty is presented in terms of precise expertise:
Medical 'we'll
look very hard ... to know exactly what her heart is like'. Opinions and values are not explicitly referred to at this stage, although the medical advice rests on the opinion that it may be worth trying surgery which in Joseph's less technically complex case was not thought to be worthwhile.
Shanta's parents
are guided towards optimism In contrast to the pessimism about Joseph,
so that the technical phrases actually hold profound
ethical and emotional significance and influence. about
their opinion of
Asking parents
the options could be regarded as an
unnecessary use of time at this stage of uncertainty.
Yet the
approach so far has set a course likely to restrict the parents' contribution.
They have been informed rather than consulted, and
relevant considerations have been set within a discrete area of medical expertis~nd defined solely as medical technical criteria not, say, as including the daily quality of Shanta's life or the parents' feelings about taking high risks.
- 136 -
James
11 years.
Double
outlet
Seventh patient, 12.45-12.51am right
ventricle,.
ventricular
septal
defect,'
pulmonary atresia.' James had one shunt when a baby, 'a Waterston which we don't do
anymore,
so
possibly
there's
[lung
damage],'
said
the
consultant, giving an example of how disadvantages of innovative treatment may not show up for some years, which limi ts doctors' knowledge and the information they can give to parents.
James
also had a Blalock shunt when he was nine. 'We had a lot of discussion about this child' at the medical meeting. The doctors talked
of
the
catheterisation.
difficulty
of
measuring pressures
during
the
When James and his mother entered, she looked
worn and worried and said:
M: Well I asked for this appointment urn, we just want confirmation that ~: No change'? . M: Yes[) James: I think Mummy's just worrying about nothing really. D: That's what mums are for. Very important that they worry, it's part of being a mum isn't it? So - James, you just slip off your shoes and go and sit over there [on the couch]. Do you think his colour is bad'? Mrs Bird gave a long answer, speaking very quietly, glanCing at James as if vainly hoping that he wasn't listening to her fears and as if she would have said much more if he had not been there. She said he was now better after a long attack of 'flu.
The
doctors examined and discussed James then the consultant said: ~:
He's okay, he could have many more years like this. To do a heart transplant on a boy of 11 would, I think, be irresponsible when he's reasonably well, but if in 10 years time he's blue and disabled and fully grown -. I think there are times when you don't rush in with urn - er. I think you'll do for a year. [1.e. until next annual visit] If you're worried come back. L: [Resigned] Yes, we'll be back. [Everyone laughed. After they had gone,the consultant said] Q.: 'We've had an hour talking with the family about all the surgical opt ions. We think that there's such a risk that we'd better leave it as long as we can.' And he began his taped report, 'Mrs Bird was worried about James. He had a viral infection a couple of months ago. He's now back to his old self.'
- 137 -
One reason for using cases from a single clinic is to show the pressure to make a series of quick decisions.
As a senior nurse
said, 'We moan about some of the doctors' decisions, but we don't have to make them.
I'm glad I don't carry that responsibility, I
couldn't, but someone has to.' lung damage.
Some heart defects caused gradual
It was necessary to check that heart surgery was
not left too late, to a stage when it would do the damaged lung arteries more harm than good.
James was also one of many
examples of the difficulty of deciding when the child's life was so restricted or deteriorating that he might be better off dead if not cured. This states the actual dilemma but not in words which a sensitive doctor would say to parents. dilemmas of
informed consent are further
Beyond the basic
dilemmas about how
clearly parents should be told, or expected to handle, the brutal truth. How can doctors use their knowledge towards making decisions based on care,
respect and just ice?
requires clear, objective rules.
The scient if ic paradigm
'We've got to measure up the
risks and weigh them up, the risks against the benefi ts,' said one consul tanto
When I asked whether you could measure and
compare such qual i ties he answered, got to make dec isions. '
'You've got to, somebody's
So on the one hand doctors search for
objecti ve data, such as the pressures in the heart and lungs, which, relieve
when measured and assessed, part
of
the
burden
of
reveal
answers which can
making medical
decisions
by
allowing them to seem less an arbitrary, individual response.
On
the other hand James' mother tries to explain her anxiety in the only terms which are acceptable in the clinic which are James's physical symptoms, his experience of being very tired and ill. However, 'flu.
she could not bring him until he had recovered from His illness can only be described later in subjective
ways; physical and mental feelings are the kind of nonspecific data which scientific assessment
tries to avoid.
A further
problem is that she can only talk in terms of symptoms in which theoret ically doctors are the expertsj as she says she 'seeks confirmation', she cannot assert her case.
Whether she wants
confirmation that her fears are justified or not is left unclear because the consultant interposes 'no change'.
- 138 -
I felt that she
wanted her worry confirmed that James' life was very restricted and they both needed extra support,
not necessarily surgery.
When he read this, the consul tant disagreed.
He said she knew
that surgery would be necessary somet ime and wanted to be told that it was not being left too late. When parents seem likely to ask for treatment which he thinks is too risky, this doctor usually sets a brisk optimistic tone and remarks on the child's (comparative) wellness. Although he sympathises wi th the mother's anxiety, 'very important that they worry',
he does not val idate it.
response without
a rational
anxiety remains a nebulous
basis since James
is pronounced
'okay' and anxiety is therefore dangerously I iable to lead to 'irresponsible' medical
decisions
discussion
findings
to
'rush
in'
unnecessarily.
concentrates on safely
in which the experience of
technical
The
abstract
illness and anxiety are
screened out. Mortality is absolute but morbidity is relative and hard to define clearly. correlate,
Different morbidity measures do not necessarily
such
as:
actual
physical
lung
damage;
medical
assessment of lung disease as partially examined, for example, through pressure readings; patients' responses to lung disease through
their
feeling
Medical attempts to obtain objective records are complicated because morbidity
is
differing
reactions
state.
partly
of
a
wellness
subjective
to disease
or
incapacity.
and
people's
their
physical
experience
interact
with
Those who resist and struggle to remain active may have
different physical reactions and prognoses from those who readily succumb and feel helpless and afraid. How accurately do medical assessments of lung disease relate to the patient's present quality of life or therefore predict the future for this patient or, by analogy, for others?
Which is the
more salient measure or prediction, the patient's experience or the medical assessment?
Cardiologists are devising increasingly
sophisticated laboratory measures of haemodynamics and cardiac function on which to base clinical decisions.
Yet some medical
specialties are moving in the opposite direction, towards growing awareness of how the patient's subjective responses help determine
the
course
of
diseases
- 139 -
such
as
cancer.
to
Greater
reliance on objective measures seems to be linked with less trust in the family's opinions.
Children like James raise quest ions
about whether more account should be taken of their daily life and personal views, whether dismissing anxiety helps them, and how they would weigh up risk and benefit of surgery if they felt that their lives were miserably restricted. Sharon 2 years. Ninth patient, 1.03-1.09pm Double outlet right ventricle,' ventricular
septal
defect,.
pulmonary stenosis.' Sharon has had one shunt and is thought to need a catheter test.
Her paediatrican has asked that the test be done before
September because Sharon's brother who has behaviour problems is due to start school and may be further disturbed if family life is disrupted then.
Both parents enter with both children who are
so noisy that the adul ts often leave sentences unf inished and words on the tape are often inaudible. ~:
Do you think she's going bluer?
M,:
Yes.
~:
Previous shunt is working nicely, going a little bit blue. What does she weigh now? [Looks at notes] 10 kilograms. M: [to child who tries to touch an electric wire end sticking out of the walll No, not there. [Child screams] Shut up. ~: We basically need to check she's in no danger. The shunt's still working well but we'll put her name down for the repeat catheter test to try to find out whetherishe's suitable for correction, or whether she'll need another shunt. My guess would be the former, namely that the shunt did its work very nicely and hopefully both pulmonary arteries have grown. It's obvious on the xray that the right side pulmonery artery is a good size and we need to check the left as well. Okay? M: Yes. Oh, er my dentist - her teeth are going bad.
They talk about dental care being important for children wi th heart defects and where this will best be given, while the other doctors try to examine Sharon and discuss other patients.
The
parents' only question about surgery is to ask when the catheter will be done, and the consultant replies in three or four months. This will be around September but the parents do not comment. They shout at
the children who grow noiSier,
- 140 -
screaming and
banging wooden bricks until they leave.
The consultant tapes a
report saying 'The parents understand the options.' This example illustrates how consent is not a standard packet of facts which doctors can hand out in any context but that it is a reciprocal process dependent on the responses of the family and doctors to one another.
The example also shows the constraints
of the hospital systems on informed consent. After a long journey and long wait, small children who have missed their midday meal and rest become upset.
Parents are expected to cope
with the distress exacerbated by hospital systems at the same time as discussing complex problems but without the help of, say, a children's nurse or a box of well-chosen toys, just as they are expected to cope with problems result ing from admiss ion dates which suit the hospital but not the family. This is the first instance in the clinic of a formal request for parents' agreement to proposed treatment,
When parents feel that breathlessness,
diarrhoea
and
cause
evaluation
of
what
influenced
by
contributory
discounted
in theoretical
agitation makes
life
the
child
to
suffer,
tolerable
is
likely
to
be
which
may
be
contingent judgements.
factors
their
When parents judge on
subjective levels, it is difficul t to distinguish between their own and their chi ld' s interests, conflict.
and where these converge or
Yet since the chUd is so dependent on the parents,
there is the question of how far doctors can help children by strongly recommending treatment and by trying to prolong life against the parents' wishes. David's parents were anxious that the consent form was vague. The eH form states:
1 hereby consent to the submission of the above child to Investigation by •..•. and operative treatment for ••.•.... the purpose and nature of which have been explained to me by Dr/Mr .... 1 also consent to such further treamtent or alternative measures as may be found necessary to the Investigation or during the course of operation afterwards, together with the administration of general, local or other anaesthetic for any of these purposes. The HH form was similar except that 'effect' was added and the same form was used for adult and child patients implying that the adult signing the form was the patient, changed.)
(This has since been
The form began:
1 hereby consent to undergo the operation of ".
the nature, purpose and effect of which have been explained to me by Dr/Mr ..•. - 165 -
Both forms are partly designed to provide essential protection for
doctors
against
potential
litigation and
to
leave
some
freedom of decision open to surgeons. A week later, when I asked David's consultant for his views, he immediately found a room to talk, sat down and gave his full attention for about half an hour. I thought he was a very conscientious and well-intentioned doctor. His reply is given at some
length
in order
to
illustrate characteristics which he
shared wi th many of his colleagues and which were demonstrated both in what he said and in how he handled my questions.
These
were: to concentrate on the topics which he selected; to want, as he said,
'to help'
by giving positive and definitive answers;
therefore to tend to avoid what he called 'difficult, straight' questions
on
questions
about
details,
in
matters
where
choice
which
as
moral
he
felt
enormously issues
doubtful;
to
perceive
complicated by
tended
to
be
medical
submerged
in
technical examples; to emphasise medical authority and knowledge, but to share with the registrar uncertainty as to who holds final author! ty,
the medical team or the individual surgeon;
to be
frank about medical limi tattons but in a general abstract way unrelated to particular patients. PAl And they were saying if rep lac ing the valve they wanted the close the heart and I wondered if you can ask surgeons to do that? Cons: Not really. Essentially, I
it was a quest ion of surgeon to stop and thought that parents mean,
and he began a long account of David's condition and the nature of valve problems.
He spoke slowly and clearly,
with much
repetition, emphasis, and in the manner noted with other doctors of
describing
uncertainty
with
definitive
precision.
For
example: Cons: One of the areas one looks at is the left sided val ve, the mitral valve, and in David's case his mitral valve or the ~ of his mitral valve is clearly abnormal. Now, the exact nature of what the abnormal i ty is at the valve is very hard to determine. [He ended with: 1 Very often the diagnosis of the prec ise abnormali ty 1s made by the surgeon on the operating table. - 166 -
Because David's breathing and feeding were more normal, surgery could be deferred. Cons: It's a question of considering the cfimtum timing for intervention - almost the later the better. li. the child has mitral valve stenosis, then the options are really to do a mitral valve replacement if possible. The youngest we have done here is at one month and he is very, very well. He's clearly not - ideal, haemodynamically, there's obvious obstruction still, but the child is well. [] I didn't say I wouldn't have it done for my child, but that I would think very carefully about it and be not at all sure because it did mean a series of operations. [ ] They're very difficult parents, er, very nice, highly informed. I was amazed at how rational they were under this crisis but it was very difficul t. They kept asking such straight questions. I think I want to answer questions that will help them to understand. But when they ask these difficult questions, I don't know, and I have to say, "well, maybe". I don't think that helps. They are highly intelligent parents and know what to expect. After he had spoken more about the difficulty of diagnosis before surgery I asked again whether parents could ask surgeons not to replace valves. The consultant emphasised the need for careful medical discussion, ending: Cons: If there's a valvar problem we will do our best to attempt to replace the valve. PAl Mm. And do youl Cons: land that discussion should come up. [1 We have problems [and he described 'last hope' surgery in neonates and went on to mastectomies, which he thought were 'identical' in that the patient consented both to a biopsy or a mastectomy depending on the surgeon's decision.] If you felt it was technically feasible and a reasonable thing to do, even if it had a very uncertain long term future, I think you'd find it very hard not to do. [ ] One a ims, with the hope of not having a child who's going to spend most of their childhood sick.[] One would think very seriously about whether this was a, a viable option. [ ] But no one can tell what the long term effects are of many of the operations we do. It may fall to pieces, and you can't guarantee where the child will come in a range of success, even whether the child will be better after surgery. I don't believe in the word 'cure' for heart surgery [and he described the risk of future problems.] Senior registrar: [Who had come in a few minutes earlier] I wouldn't agree to a mitral valve replacement if it were my chi Id. Cons: A lot of operations are on that grey scale. [He listed surgery he would accept for his own child, but did not mention any operation he would reject, although he said:] But I'm not sure of some of the more complex things we do, how I'd react as a parent. [] Dr S who follows up our - 167 -
cases into adolescence always talks about 'early triumphs and late disasters'. I think it's very important to see neonatal treatment in that context. We think the things we do are marvellous now, but whether they're going to be marvellous in ten or twenty years time is another matter. Doctors would often begin by talking confidently about their work and slowly would become more pessimistic, suggesting the problems for them of making connections between clinical work and its effects on families. The tension between medical and parental knowledge and responsibility to the child, together with medical uncertainty was further explained to me by a surgeon. (It is difficult to describe the mixture of commitment, energy, and concern, mixed with humour and self-crit ical awareness with which the cardiac teams worked.
One indication is a small plaque
in the surgeon's office saying, here.')
'We do precision guess work
When I asked a question, as with David's cardiologist,
the surgeon at once sat down and talked very fully and honestly. He explained that sometimes the only way to know whether a val ve could be repaired was to start cutting it.
' If it starts
to leak catastrophically, usually you can't put it back where it was.
You may find that the only way to get the child off the
table, [i.e. to survive the operationl, is to replace the valve.' I asked how he would advise parents.
He repl ied that after the
JCC he would have a long talk to see how defini te the parents still were when the difficulties had been very carefully assessed and exp la i ned. 'And that down look
then you would perhaps only go in on the understanding you may have to replace the valve. I think it comes to: would you do it to your own child? I go home and at my kids and I think about it a lot.'
A viable option Mothers
in
the above examples
talked specifically about
child's missing school or discomfort or disability.
Doctors
tended to talk abstract ly about surgery as a 'reasonable' 'viable' option.
the or
This approach can lead to assessing surgery for
technical feasibilty, whether a new valve can actually be fitted, instead of whether the valve will harm or benefi t Doctors
are
obliged
to
encourage
- 168 -
faith
in
modern
the child. medicine.
David's cardiologist wants only to answer questions clearly and positively.
He lists the operations he would allow for his child
but does not say which he would reject. The surgeon just quoted told me that the difference between people's relations wi th, say, a bank manager and wi th a doctor was fear, fear that they may be hurt or may die.
He wanted to
try to redress this imbalance through sharing medical knowledge in a reassuring way. So his information was influenced by his own reservations yet enthusiasm. Surgeon: I'm very much in favour of transplantation. Cardiac transplantation is here to stay for sure, the results are good and they're getting better. [He mentioned extra problems of transplants for growing children, with the long term use of toxic drugs.] Transplantation will become so rout ine we won't be quest ioning the ethics of it. [ 1 So the stress will be less because the kids will be great afterwards. If you like, we've already done over 400 heart transplants here, because we use homograft. aort ic valves taken from a cadaver donor. I mean those kids are running around normal. I'm not yet sure of the risks because we're just reviewing the results but the risks seem to be very low for homografts. You have a very high risk if you put in dacron or plastic or metal. [] It is difficult when you bring the age down. The potent ial benefi t becomes more complex, short term risk versus long term benefit. ( ] As they talked, both doctors became more hesitant about assessing the benefit of their work, such as by connecting it with the experience of families. by
quanitity
attitudes, patients
not
Utilitarian values of measuring benefit
quality,
and
current
political
Griffiths
which value economic saving above the benefits to of
life
and
health,
tended
confidence in the benefit of their work.
to
undermine
medical
The surgeon continued:
'But who am I to judge the value of what I do? That's up to public opinion and the media, that's reality, and the politicians we elect to make value judgements about what is worth funding. In my whole 11 fe, I'm going to save less children than die every five minutes in Ethiopia, and ( 1 these have all got twisted hearts. I'm doing this because I love the kick I get when the children get better, because it's technically satisfying. But its value in a world sense Is very quest ionable. I generate handicap - to a mi Id degree and it's better than dying, but it is still a handicap. It's a cost to SOCiety. [ ] There is no doubt that open heart surgery is not as safe as we think it is.'
- 169 -
Connecting medical and family knowledge Two questions raised by the examples of Tom and David are: how much should parents share in surgical decisions?
and, should
operations be performed which may sustain an intolerable life? Both quest ions have much to do with values as well as with science. moral,
When doctors regard these questions as medical but not they may
see
them solely as
professional
judgements;
outside the jurisdiction of the parents. Basic moral dilemmas can get lost in a mass of medical percepts. Discussion then shifts from whether an intervention should be made, to how it can be made, so that the validity of the intervention may be assumed before it has been fully considered.
The living experience of
the child and family, their values, the basis then be ignored.
o~
their lives may
One cardiologist said:
'The idea that you can share discussion wi th parents is nonsense. The imbalance of information is too great. It is a teacher-pupil relationship.' Yet dilemmas involve values.
Parents varied greatly from wanting
any treatment that might extend life,
to thinking that their
chi ld had suffered enough, or wanting to be more certain that benefit
was
likely
to
outweigh harm of
treatment.
Down's
children with atrioventricular septal defect. provide a range of examples.
Some parents did not want potentially life extending
surgery, because 'about twenty years may be the best for her. know then that we'll always be there to look after her'.
We
Others
did not want to intervene in the natural course of disease but to leave the length of life 'to the Creator'. Some parents wanted their Down's child to live as full a life as possible. course we want her to have surgery. time when you are branching out.
'Of
Your late teens is just the
It's difficult enough to get a
job if you're handicapped but impossible if you are sick too. want as much for her as for our other children.'
We
Other parents
thought that their child had been unlucky and therefore should have
extra
compensate.
benefits,
including
surgery
if
necessary,
to
Two mothers spoke about their bitter regret and
years of depression that their chi ld did not have surgery in time, and two others told me of their 'battle' to find a hospital where
their
child could have
surgery
- 170 -
after
at
first
being
refused. There :is a tendency to base medical decisions on estimates of the
child's
Further,
physical
health,
setting
aside
mental
health.
doctors are calculating ever more precise measures of
physiological
activity
recognition of
the
medical
rests
trust
in
laboratory
living, on
tests,
moving away
everyday person.
scientific
from
Increasingly,
assessment,
less
trust
as is
placed in the opinions of the family and involvement with them. Social matters are sometimes said to be acceptable in GP work but not in highly technical medicine.
Yet many, if not most of the
children had defects which (so far) could not be wholly cured, some had months of illness. Gi 11 igan' swords, also
for
the
Their families were not looking (in
1987: 42) only for 'the heroism of cure',
'vulnerabili ty of
care',
that
doctors
difficult work of becoming involved with families
risk
but the
in order to
help them to cope practically and psychologically with chronic heart
disease.
Respect
for
scientific
tension wi th caring for chi ldrenj technical
and
social
in
aVOiding personal issues can
lead to less appropriate decisions. care,
medicine can work
At some level science and
medicine,
have
to
combine,
the
pathways meet, and the degree to which they converge affects the quality of informed consent.
- 171 -
CHAPTER SEVEN THE INPATIENT CONTEXT 1. THE FAMILIES' EXPERIENCES 'When I trained as a nurse 11 years ago, the nurses did everything for the children. But now 1 am here as a mother, there are far fewer nurses and 1 find the mothers are expected to do almost everything. 1 think this is right, but we cannot care for the children properly if we are not shown where things are kept, or not allowed into the kitchen, or to stay with them at night. ' (Mother in one of the cardiac units)
Parents now share in caring for their child in hospital far more than in previous decades.
Yet doing tasks does not necessarily
mean also sharing in informed decisions about medical care, or even about parenting care.
Voluntariness and unwillingness in
proxy consent to surgery are elusive qualities to observe.
They
may perhaps partly be indicated by parents' estimates of how much they are respected, involved or excluded as part of the decision sharing team. indicated by
The quality of
respect
the respect with which
for autonomy may be
individual children are
treated and the flexible ways in which parents are able to answer their needs. L1 terature on consent often omits the context of part icular hospitals and varying patient-staff relations.
Such abstraction
can help to arrive at cone lusions which are not too c I ut tered with personal details and which can be usefully applied in other cases.
Yet ignoring the setting can obscure crucial elements in
consent. in:
The social context influences the proxy consent process
the amount of discussion,
(how much parents can be present
and can speak) j the qual ity of discuss ion, (whether it is free or constrained) j
the content of what is discussed (the choice of
medical and social issues). This chapter reviews the social context of proxy consent. First, using examples of the physical space allowed for parents, possible influences on the mental space allocated to parents in the consent process are examined.
Second, the contribution to
the consent process of staff responsible for non-medical care Is considered.
The third section describes surgery as a set of
practices to which parents may give qualified proxy consent. final
section
considers
examples
- 172 -
of
formal
consent
and
The of
nonconsen t.
I t quest ions the nature and purpose of current
consent practices. Space The hospitals' design did not encourage involvement of parents. They
were
both
Victorian
buildings,
with
little
space
for
amenities for patients, staff and relatives. Both were in parking meter zones with no car parks for visitors. Many of the patients were small babies but neither specialist hospital had a materni ty ward.
New mothers were t ired by the long distances
they had to walk to the canteen and their bedrooms. The four wards I observed will briefly be described to suggest connections between the space and design, the routines and rules and their effects on parents' ability to take part in decisions about their child.
Each hospital had an intensive care unit,
A nursing officer at HH told me: 'Parents leave the place looking like a pigsty. I've had to throw out a lot of those folding beds we were given for them. I am not having them staying on the ward over night and that is final.' Many parents and junior staff disagreed with this attitude as shown by our nurses' survey (attached).
A mother at CH said:
'I went back later in the evening and found he was so worked up they had to give him a sedat i vet He's six months and he's terrible, so clingy. They said they'd call me if he got upset. I thought, there's no reason to let him get upset I As soon as he woke I could have got him to sleep, and there's no way I'll leave him now. By midnight I burst into tears and said please don't make me leave him. The nurse said she'd get into trouble if I stayed, but she sat talking with me for 2~ hours explaining all about his operat ion and all the tubes. I thought it was marvellous. Then she let me stay in his room on a bean sack. I know it's a fire risk, [this was one reason given for not having parents in at night] but Edward would have been safer wi th me there to carry him out. I wouldn't have done anything to get that nurse into trouble, but she got a speaking to and afterwards she said that she told the nursing officer that she goes for the psychological effects on the mother as we 11 as the baby t f they are separated. I
- 184- -
thought, good for you. What's the point of gett ing us upset? She said if she had half a chance she'd have mothers staying. ' The accommodation officer in each hospital was concerned that there was not enough space for everyone who needed to stay.
One
told me she had drawn up detailed plans for using more hospital flats for parents. 'We need a dormi tory for fathers. But it came to nothing. The administrators wanted the rooms for offices. They don't understand the need. Some fathers sleep in cars. Others are paying £36 a night for bed and breakfast, and living on snacks in order to manage. People from Cornwall are terrified of being in London. If they are on supplementary benefit only one parent is paid for so the father can't come at all, and often they are not on the phone. If the child is very ill they need to stay together. Ten double rooms could take care of the problems. I have to juggle and switch people around. It's a desperate s ituat ion. If they knew the despair I see .•.• I wish we could be more flexible, and I think letting rooms could pay for itself with the contribution from parents.' The parents found the officers usually kind and helpful.
In my
interviews, lack of space to stay near the chi ldren was the most commonly mentioned feature of the hospitals which caused parents greatest distress.
The officers and parents were caught in the
gap between supply and need.
The officers tried to be fair and
tactful, but somet imes fraught parents had rows wi th them and they resorted to defensive rules.
One said,
'We've had to say only one parent can stay. We used to have two, but sometimes other parents would come and rage and demand. Making allowance for some just became impossible, and you get the 5% who abuse everything so badly.' Most parents just accepted decisIons.
For example, one evening I
was near some parents who knew their baby was very unl ikely to survive.
An officer phoned the unit to ask the mother to return
her key as someone else needed her room.
The mother agreed
saying to me, 'What does a key matter at a time like this?' had no energy
left
to argue.
She
Sometimes doctors or nurses
intervened, asking the officer to arrange for one or both parents to stay if a child were very ill, but often they seemed too busy to know about, or be able to take on, these matters. - 185 -
Access and consent Parents' need for accommodation near or with their child may seem remote from informed consent, but here are some examples of how the two can be related.
Adul t pat ients are able to consent or
dissent to procedures because inevi tably they are present I usually conscious.
and
Parents have to arrange to be with the child
in order to be able to know what interventions are proposed, and to give or withhold consent.
For this, non-resident parents have
extra difficulties, partly because the staff are less likely to see parents who have to be absent as having an integral part in preparing,
comfort ing and caring for the child.
'You have to
watch out all the time,' said one father,' or you turn round and find they've done an injection or taken him to xray.' Many parents wanted to give or wi thhold consent to interim details
in their child's daily nursing and medical
confident adul t pain reI ief.
patient might make requests,
care.
A
for example,
for
Parents wanted to be present to do this for their
child because the child might not be able to ask, or might not be heard as an adul t would be,
and because chi ldren can be more
frightened than adul t pat ients.
For example, parents wanted to
o~
that an xray be delayed while it
ask if a drug was necessary
was explained and the chi ld was prepared, recover from some upset.
or allowed time to
Parents acted as two-way interpreters
between the child and the staff, explaining the child's needs to the staff and the staffs' actions to the child. Parents were also necessary mediators between the immature patient and the potentially overwhelming contact with a range of strangers.
Parents filtered and partly controlled experiences to
help the child to cope with them. One mother wanted to stay
overn~ght
to talk to him. , The SHO came in wit h me and he was very good, gen t I Y putting forward in a slow way what they'd hoped to do, what possibly could have been, but now Jamie wasn't growing it was cruel to give him surgery that wouldn't cure him, and For about drugs that wouldn't help, but gave him a rash. five minutes Mr Brown insisted the rash was due to the baby being allergic to the sheets. He couldn't accept the idea of bad medicine. I thought it was lovely that he was trying to keep up some kind of faith. We went on, the SHO saying, "But Jamie isn't growing, Mr Brown saying, "Look, he's gett ing longer," and the SHO saying, "He's not growing." I said, "I t' s very di ff icul t for you to accept that Jamie's not doing as well as you want." And that broke the escalation of their argument. It was good, the social worker and doctor working together. I interpreted the doctor's facts and the SHO did his good talk about the prognosis being poor. He only later used the word "die", and then Mr Brown went in for real denial, saying, "Yes, he'll have surgery later and he'll get better and be running around." SHO: "No he won't." Me: "You really need to hang onto that hope that he'll get better." Mr Brown: "Yes. You don't know definite 1y he'll die. Who knows that?" as if he felt quite impotent. You need to have some - 194 -
element of control in the dest iny of your child. When a doctor says, "He'll die," a bi t of you wants to say, "No. no. He's mine." Then at the end, the SHa spelt out, "Jamie is going to die." Mr Brown said, "Yes, I've known for a year - but he's going to 1 i ve." I t ended wi th nothing set tied. A question for nonmedical staff was how their work fitted in with medical work.
How much should they act separately, or 'obey orders', or share in and try to influence the medical work? Some doctors
were
described
as
appreclating
the
value
of,
and
referring patients for, psycho-social care, discussing patients on fairly equal terms wi th nonmedical staff, listening to their views, and taking these into account.
Nonmedical staff thought
that their work was more effect i ve and pat lents benef it ted when medical and social care were combined in this way. interested and committed,
'I feel
almost dragged into his team.
My
insights are used,' said the social worker of one such noncardiac doctor. defects
Cardiologists treated
tended
surgically
to
concentrate
in acute
crises
on
anatomlcal
and seemed
interested In chronic and psychO-SOCial problems.
less
A psychologist
in one cardiac unit said, 'They don't often make referrals I feel there must be so many children and parents in distress I don't hear of. I'm sure there are particular psychiatric problems with cardiology. I think they don't see any need for anything except the medical. They're so geared up to drama - to intensive care and emergencies, they haven't an interest in the more human side. And they have to some extent. to ignore it in order to cope and to be able to go on working there.' The soclal worker said, 'Their science training tells them that you can't let emotion get in the way if you want to think logically and rationally. So they risk forgetting the human element and thinking that feelings are not valid. But if you irrationally try to deny pain and anXiety they can disturb you more that if you acknowledge them.' Compared with many papers on the psychological effects of cancer, there is little published work about the psychology of congenital heart
disease,
such as
fear of
mutilation,
or
the symbolic
importance of the heart which is, as one mother said, 'the centre of the body'.
Doctors have been described as gatekeepers to - 195 -
resources. often
Contact between patients and paramedical workers
depends
on
doctors
opening
gates
by
referring
patients and also by giving and receiving knowledge, taking more than medical insight into account. closed,
for example,
if
If
their and by
gates remain
pat ients are not referred,
if
soc ial
workers are expected to support medical decisions which they do not reasonably understand, and if doctors exclude nonmedical considerations, then the assumption that cardiac patients need The only medical care can become a self-fulf 1l11ng prophecy. social
worker
said,
'If
doctors
keep
ignoring
psycho-social
information from the nurses, the nurses can't value it and keep passing it on, so decisions can't be made wi th the full facts.' Psycho-social needs may then pass little noticed on an individual level
and
research,
on
related
general
publications and
levels
training.
of
medical
practice,
As Weber pointed out,
rationality does not inhere in things, it is attributed to them. We only value things if we notice and understand them. A further reason, for avoiding nonmedical issues was doctors' wish not to intrude unnecessarily.
This was mentioned by an SHO
when talking of a family she was worried about with the social worker in an office at HH.
SHO:
I don't want to be nosey and interfere. I wouldn't want people prying into my private life. But I feel we've put this family under such pressure. They are strange, but they might have gone jogging happily along if we hadn't interfered. But we've kept their child in here for so long. And there's the suspense of not being able to tell them what was wrong and what we could do. The GP says the father has threatened to kill Alan. [] I feel responsible and that 1 ought to do something, as long as 1 can help, not just interfere. SIN: I think Alan is a very upset chi ld and we are not doing our job if we send him home in a worse state. The mothers complain that the children get so bored and depressed here. They're left on their beds and they're lonely. They need a teacher and a play therapist. At least we ought to initiate some family therapy which they can follow up at home, though it will take a very long time.[ ] Here, children bring in problems and take them home again. That whole aspect is totally missed. We need short term support here, to help to prevent long term problems. And to make the other staff, doctors and nurses - to raise their consciousness about children's warped fantasies. [ ] SHO: At my last job we reluctantly sent a child back to a violent home [ ] and a few weeks later he was dead. I felt responsible then, and 1 feel very anxious about Alan.
- 196 -
The SHO's words illustrate doctors' information which intervention.
they
can
use
wish to select only that for
effective,
beneficial
Sometimes I felt so worried about a family, it was difficult, say on a ward round, to think about other patients.
In order to
be able to divide their attention fairly, doctors had to stand back from becoming too involved. One method of sustaining this necessary discipline was to use a medical language which translated a patient's suffering into impersonal, manageable terms.
The following example shows the power of words to create
different responses, and the way in which the social worker tried to bridge the
language barrier between
parental response.
the medical
and
the
The social worker heard a medical report that
a child was very ill, given in rather formal terms about cardiac function, which did not enable her to realise what the child and parents were experiencing. and was shaking.
Later when I saw her she looked white
She told me:
'I've just met Mrs Davis. She came into my room and burst into such terrible sobs. They just want to go home. She knows her daugher is dying, that she is very, very ill. It's awful. If she were my child I would opt for surgery. I couldn't bear to go on wi th this. It's so dreadful to see. I hadn't gathered this from the doctors.' In this case,
the soc ial worker interpreted her part
in the
consent process as reporting (in Bion's terms 1962) the family's 'direct, raw,' subjective experience, and their wish to go home, to the doctors who were cons iderlng surgery. social worker as their advocate.
Parents used the
One mother told me that she was
angry about what she saw as unnecessary treatment, but she wanted to preserve good relations with the doctors.
She said:
'I told the soc ial worker exact ly how furious I was and think she has had a word wi th them. Things are certainly better. ' Link
workers who
interpret
for
Asian mothers at
the London
Hospital found that they inevitably became advocatesj explaining to the staff how routines distressed their patients and working for improvements in care, while also explaining to the mothers reasons for necessary practices.
In a similar way psycho-social
- 197 -
workers act as interpreters and advocates between the medical and the family world.
Sometimes doctors assume that interpretatlon
need be only one way: to explain medical advice to the fami ly. Psycho-soc ial workers saw their work as two way and thought a vltal part was to help doctors to listen to patients. concerned if doctors seemed not to listen.
They were
One said:
'Information gets lost. It's told to people but it's not passed on. No one puts it all together, so decisions can't be made wi th the full facts in mind. Some doctors are very formal, they inhibit things. They are full of things to tell and they won't 1 isten - or only to informat ion they decide to ask for, strictly in the given way they determine. ' Yet social workers also appreciated that people's accounts could be complex and many layered.
One said:
'It's all splitting and projection. For example, we put good things into doctors, and think they are kind and powerful and then parents get angry because doctors aren't omnipotent. But how much should we reasonably expect from them?' When consultants held a joint session with a family, the social worker found this very benefic ial.
She told me of an interview
with Alan's father (see above) one evening. 'Alan'S father was very cool, not at all vicious and explosive as he had been with me earlier. He started by saying why couldn't Alan have a brain scan if we didn't know what was wrong with him. Dr S laid it all out superbly, precisely, 1n beautiful clear language. He described exactly what was wrong and what could be done, and how there 1s only one other hospital in the world where this could be diagnosed and treated. He spoke with great authority but he was very calm and relaxed. He wasn't authoritarian, but Mr H had no way of manipulat ing him. Dr S made it clear precisely where we stood wi th treatment, and we all fel t calmer and more confident.' A few ways in which connections between medical and psycho-social issues are managed have been outlined.
Connections and barriers
are created through interactions set within influential hospital routines and policies. part
Nonmedical staff can play an important
in the achievement of informed and voluntary consent in
helping to draw attention to underlying issues and to elucidate
- 198 -
people's differing responses. helps
to
reconcile
parents'
This often campI icated process hopes
and
medical decisions so that parents feel reasonably freely and wi 11 ingly. workers
help
parents
to
fears
with
the
final
that they can consent
In some cases, psycho-social
understand
medical
decisions
more
clearly, and samet imes to influence and al ter medical decisions about surgery. Operation routines In giving proxy consent, parents agree to delegate responsibility to the hospital staff.
Yet it is not always clear where parental
responsibli ty stops before surgery or resumes afterwards.
If
parents are not happy about their child's treatment they have to decide whether
they have any right
or competence
to
try
to
intervene. Each hospital shared similar routines, but differed, for example, in that CH had far more surgeons and typed theatre lists were circulated well in advance.
Many children had to wait
in CH for four days after admission before surgery.
I was told
that the blood bank needed this time to arrange blood suppl ies for theatre. Waiting for surgery At HH,
theatre time was limited.
Surgeons planning the lists
juggled with the likely length of the operation, its urgency, the problems of cancellation. UK
patient,
than a
postponed surgery. case,
say,
For example, it was easier to send a
patient
from abroad,
to wait
for
Operating lists were routinely overbooked in
a patient developed an infection which meant that
surgery would have to be postponed, case,
home
or if,
after a di ff icult
there might be time for another long case or only for a
short one.
Surgeons told me that if they could select almost at
the last minute from a variety of waiting cases, the theatre time could be used most effectively, ultimately to the benefit of all the waiting children. Last minute selection could create problems. to make complicated and expensive arrangements, their other children
in council
care,
or had to put
felt
under worse
stress when operations were delayed or cancelled.
Mothers on
- 199 -
they
If parents had
supplementary benefit had to bring their SB book into hospital to claim the fares
but could not draw more than two weeks of
payments away from their home post office.
One father missed two
weeks of contract work in Ireland and paid for two return flights while waiting for his child's repeatedly deferred operation. Unemployed and forces families received financial help but low paid families had little or no help with the daily mounting costs of transport, telephoning (often through neighbours), paying for the care of their other chi ldren, and for their own meals and accommodation.
Children with chronic illness tend to be in below
average income households because parentsJcareers are disrupted. (Burton 1975) At a time when parents most wanted to act responsibly to resolve problems, many felt at their most weak and vulnerable. There is not space here to repeat the parents' words of sadness, frustration and anger at being trapped into routines which they Informed consent to surgery
though t were par t I Y unnecessary.
involves relinquishing autonomy and control over time, resources and routines which, deeply affect the whole fami ly in many ways seldom recognised
by hospital
authorities.
Utilitarian and
scient if ic princ iples of eff ic iency separated public work and private family areas of 1 He,
instead of recognising that this
disconnection was at the root of many family difficulties. Consent and the trust that consent entai Is are assumed to relate to benign authority, implying that parents are asked only to consent to procedures which will benefit the child.
If they
perceive
process
that
they have
involving benefi ts and dilemmas.
consented harms,
Needing to trust
to
a
complicated
parents are faced wi th several
in medical benefic-ence on which
their child's life depends, parents are reluctant to recognise that harms might be involved.
When they begin to have doubts,
they are uncertain whether their doubts are valid.
They do not
know whether or how to express criticisms on their child's behal f, as in the following interview.
The mother quoted next
wants to trust in the good intentions and the efficiency of the staff.
'She
knows
that
delays
considerations which she does not therefore she cannot
are
complicated
fully
medical
understand and that
judge the whole situation.
- 200 -
by
Instead of
talking as if she could discuss her view on equal terms with the staff,
she spoke
to me
in the
language of
uncertainty and
helpless dependence, of her 'despair'. Mother: I don't think we've been treated badly at all, but we came in nine days ago on Sunday expect ing the shunt. Then they said they were toying wi th the idea of doing a catheter on Wednesday. That didn't material ise. Then 1t was going to be Friday but some emergencies came in. So on Thursday evening they said it would be next Tuesday. I've seen people come in and go to theatre and we're still sitting here. I feel we've been put off because it's just a shunt. I don't know whether a shunt Is vital. Well I know it's vital to Nigel and it's vi tal to me for Nige I, but compared to what the others have done, is it important? I don't know. They seem to keep saying to us "Tuesday, hopefully," "Friday hopefully". I know he isn't desperately ill and urgent, but I mean how long can you go on a "hopefully"? I get terrifically geared up for it each time, and then to let the tension go again, to be repeated the next day, which I'm, - I'm find ing very difficult. It makes you wonder, how much do they care about him? They are very understanding. The sister, I asked her, "Am I being unreasonable?" She said, "No, you're not. PA: Unreasonable? Mother: Well, because I was in despair when they were going to cancel again. They said the only hope was if this little boy had a temperature and the worst of all was he was a private patient. I asked if he was going first because of that. They just shrugged their shoulders. It makes you very bitter. When babies'had to be starved, sometimes for many hours before or after
procedures,
they
and
distressed, as did some nurses.
their
parents
became
extremely
One nurse said:
'It's all right for the doctors. They just say, "starve for eight hours". We have to do it.' The junior doctors intervened when the baby's heal th might be affected and they also were aware of the stress on families.
One
SHO said to another, 'I've put Richard on a drip. His blood sugar is getting too low. His parents have been so mucked about. Last week they were told it would be Friday, then this TueSday. This week they were told it would be next Friday, then suddenly they were told it would be today. It can't be helped he's been wait ing so long. Mary's been in theatre for hours now, I expect they took about two hours down there trying to get a line in.'
- 201 -
Getting the line in meant inserting a tube into a vein or artery partly for administering anaesthesia. minutes
upwards,
and
was
just
one
This could take from ten of
the
procedures
which
prevented surgeons from predict ing how long an operat ion would take. The ri tuah before surgery made some parents feel
at a
distance from their child. A mother who was si tUng beside the cot in which her child had been screaming for a long time, said to me, 'I don't think I'm supposed to pick him up, because he's all clean ready for theatre.' Al though she fel t unable to help the baby, she also fel t unable to leave him for what might be their last time together. Children had to wear whi te gowns, which many of them hated. Some hospi tals now provide patterned gowns or let chldren wear their own clothes as long as these can be easily removed.
During
a ward round an SHO said of one baby who was wearing a long white gown, 'The family has a history of SIDS [cot deathl.'
The mother
said to me: Mother: PA: Mother:
She's going for a burial. For what? A burial. PAl Is it a barium? Oh yes. I wonder what made me say that. Oh if Mother: only I could stop her crying. She hasn't been fed for five hours. What will a barium be like?
When chi ldren were old enough to ask quest ions about delays, parents tried to hide their anxiety and to reassure the child, which was difficult when they did not know what would happen and so what to prepare the child for.
Parents' relations to children
mirrored their relation to the staffj many parents depended on being given medical and nursing information in order to be able to translate this into terms which would inform and reassure the chi Id. HH ward patients were divided mainly into three large rooms for babies, under fives, and school age chi ldren.
Parents wi th
babies could feel isolated because the cots were partly screened from one another.
Mothers said,' • You feel you shouldn't go too
near other people, everyone is so worried about germs wi th the babies.'
The school age room was next to the playroom.
- 202 -
Children
brought in activities, some made friends and their parents could usually explain to them, prepare and reassure them.
Their main
difficulties were loneliness and boredom, and vivid, imaginative fear about the treatment. of surgery.
Adolescents could be extremely afraid
One fifteen year old was frightened if her mother
even left the room.
Her operation had to be cancelled after she
had been taken down to the theatre and,she had to go through this alarming stage twice.
Whereas small chi ldren recovered quick ly,
some even shooting down the slide on their tummy a few days after surgery, older ones moved slowly wi th obvious fear of pain for days after surgery. The stage which seemed to be most difficult was in the under fives room.
Parents could usually explain little to the child,
who would demand almost constant at tent ion,
struggling to get
down on to the floor, the normal play place at that age but the room was too crowded.
Hard upright chairs were impossible for
nursing a child comfortably, so bored children spent much time on their beds.
The play room had no comfortable area for small
children and was at the other end of the ward.
Afraid of missing
events such as a doctor's visit, parents sat by the cot or just outside in the corridor, continually moving the child out of the traffic.
The
room
was
often
noisy
with
crying,
talking,
shouting, and the horrible sound of children being 'sucked out' by physiotherapists. much background noise
My interview tapes from that room had so that
they
illustrated
the problems of
trying to concentrate on informed discussions about surgery.
If
chi ldren did fall asleep, they often had to be woken by one of the staff.
'If only they would post up a timetable of the rounds
and the ward routine,' said one mother, so that we knew what to expect next and then we could plan their meals and their naps.' Consent and care These details are mentioned in order to indicate many ways in which parents felt helpless.
In consenting to surgery, they had
also consented to some circumstances which they disagreed wi th and which increased their difficul ties.
From the medical or
philosophical view these details may seem irrelevant to informed consent.
From the parents' view they were crucially important
- 203 -
because
giving
proxy consent
prompts parents to ask:
is
about
care.
Imp li c it I Y it
What is the best dec is ion to agree to
for my child's medical care?
How can I care for my child in
order to help him or her through surgery In the best way?
What
sort of care is provided by the hospi tal staff to whom I have entrusted my child's wellbeing?
Was I right to agree to this?
Where does my responsibility end and that of the staff begin? How are parents cared for in order to enable them to care for their children?
Hoxter's theory (1977:214) that 'the mother has
to cope with these feelings of alarm and distress in herself, before she is able to respond approprhtely and give relief to the baby' is relevant here.
The following example indicates the
kind of experience which could happen in the under fives room. One mother told me that her 18 month old son was waiting for an operation. 'They've got to patch up two holes and a couple of valves have got to be enlarged I think. They've cancelled the operation twice and I want to get home. My two other boys are rather eli ngy. We're not on the phone so I send them postcards. My boyfriend's looking after them. I didn't want them put into care. I'll have to draw some more benefi t soon because he hasn't got any money or a job. I don't know what I'll do if we have to stay longer than two weeks. My landlord said he wouldn't notice my friend staying there, in case they stop my benefit. [] Seeing them laying there asleep. They look so innocent and comfortable. You feel funny inside. The longer you wait, the harder it seems to be. All you can do is sit a~d hold his hand. You never know what's going to happen next. Stephen awoke hungry and irritable and having to be starved for the operation which was later cancelled again.
With nothing to
do he wriggled and worried his mother and then bit her.
Already
extremely fraught, she bit him back 'to teach you that hurts' and he began to scream. That evening she was walking around with him because, having been asleep after the premed for much of the day, he was now waking up.
She said that he screamed if left and she would have
to miss supper.
She seemed to be feeling exhausted,
unable to find help.
I offered to look after Stephen and enjoyed
holding the warm little boy. operation.
lost and
His mother's
Next day, Stephen died during his
memories of their last days together
were not 1 ikely to ease her grief.
- 204 -
About one 1n ten of the
surgery patients died in the unit.
Consenting to high risk surgery for their chi ld is arguably one of the most di ff icul t times parents can experience, and much of the strain comes from trying to appear calm in order to reassure the child, yet feeling helpless. 'Your whole body is pumping adrenal in around - ready for action to protect your child - and there is nothing to do. You feel so helpless. Yet anything you can do is precious to you, to help you to calm down and stop feel ing so useless, ' said one father.
Parents needed the support of friendly staff
and clear plans, but some felt isolated and many felt uncertain. Taking leave An important moment for famil ies was just before the child was taken to theatre.
There was often a rather uneasy transi t ion
from the parents' careful at tent ion, to inst i tutiona I rout ines. For example, the parents of a six year old told me very quietly so as not to wake her 'it's only a 5% chance of her making it'. She was asleep when the trolley arrived. Nurse: You I'm afraid.' Mother: Can Nurse: Oh point really
won't get any porters, there'S a union meeting we come with her? well, you can come to the lift but there's no because she's asleep.
The mother kissed the girl and asked the father if he wanted to say goodbye, but there were too many people round the bed.
She
walked a few steps and then suddenly walked another way crying. The bed crashed against the doors and this woke the child who stared around her. Taking leave was just one of the events for which parents wanted to be informed and prepared to know what to do.
Many
mothers said that afterwards they fel t angry or regretful that they had not known how to manage better what was to them a very important occasion.
One mother, who had been a theatre sister,
wanted to stay until her twenty month old child was unconscious. 'Basically it's not done here and different people came with reasons why I shouldn't go [to the anaesthetic room]. They said the gases might induce labour because I'm pregnant, and there is no privacy, I would be able to see into the - 205 -
theatre, and that I shouldn't go into the sterile area. I just stayed with her. She was not upset and she was conscious al though they had told me she would be asleep. The consultant anaesthetist came out and said I could go in so I just changed into some overalls and I could actually hold her while she went to sleep. He was very good but I felt the nurses were pretty hostile. I held her till he put the mask on. She cried but, um, I fel t i t was a lot less traumatic for her. And I felt a lot better about it, because even if it is only a short wait there, they see so many faces come and go and their perceptions are altered by the drug they've had. So I fel t i t was just not done to leave her. I fel t better while she was in theatre. I knew I had done everything I could to reduce her fears and I think in the end she will have suffered less trauma when she comes out of here. The child needs someone fami 1 tar unt il they are asleep and they haven't time to get to know the ward nurses, anyway I don't think the nurses stay down there long enough. I think some mothers don't real ise that the child may have to wai t a long time and anyway can get really scared and frightned down there. I t is very important to get the chi ld to sleep as peacefully as possible and only someone they know and trust can do that. If I hadn't been able to go I would have felt very angry with the system and that would undermine my confidence.' This was an example of a stage when many parents fel t very strongly either, with this mother. that their care was important. or else that it was wholly a medical matter.
As my survey of
parents' views shows
Frohock (1985)
has shown how a course of treatment which is intended to benefit Is considered by doctors as beneficial and therefore not harmful. Distress is likely to be discounted in medical equations and, I suggest,
in the very language of 'risk/benefit' which stresses
certain benefl t against uncertain harm. loaded phrase would be harm/hope.
Inverted, a simi lady
American studies have shown
that physiCians report greater fear of death than that reported by control groups of patients. (Adng 1968) doctors
may accept higher costs of
This suggests that
painful
treatment,
as a
worthwhile means of postponing death, than patients would choose. There are many pressures on doctors to support their own and
- 254 -
their colleagues' credibility and to inspire confidence in their patients.
They do this partly by supplementing rational analysis
of the vast body of taught and textbook medicine, most of which they have not efficacy.
time
to
test,
with
trust
in overall
medical
They concentrate on physiological activity which is
easier to assess and manage than the patients' feel ing states. The surgeon in chapter 6 suggested that personal contact wi th patients brought emot ion dangerous ly nearer to consc ious awareneSSj keeping fami 1 ies at a dlstance was a way of controlling
this.
Abstract
theory
offers
assumptions which mistrust engagement, parents'
knowledge
of
their
child,
a
refuge.
Yet
which is the basis of may
denigrate
practical
knowledge gained from the low status work of child care,
in
preference for respect for the theories of high status medical authorities. superior
Superior scientific expertise may be conflated with
moral
judgement,
leading
to
the
response
of
one
cardiologist who said, 'Oh no, we cannot leave parents to make that terrible decision, we have to make it for them.'
Another
cardiologist told me: 'I consider that we are paid to make decisions, it's part of the job. If parents agree their child should go to surgery and the child dies, they will blame themsel ves and it's a decision they have to live with for ever afterwards. Sometimes it helps if they can blame someone else. 1 think we have to accept this. [] I try to present the choices without bias but that's impossible, and it's all an opinion as to what we all said. It's all in the mind and very dificult to assess.' Paternalism and attempts to relieve parents' burden in medical dilemmas have vi tal elements of compassion. need this reI ief.
Many parents may
However, there is the risk that elements in
paternalism of mistrust, of assuming that patients/parents are incapable, will prevent doctors from listening to people who do want to share in decisions. guilt,
Parents cannot wholly be freed from
and this may be exacerbated if they have consented to
procedures that they are not satisfied they understood or agreed with.
A bus driver's wife said at HH,
M:
I want to know all the intricate details for myself, as 1 can cope better if 1 know. A lot of parents don't want to know, but doctors should be able to tell the type of parents they're dealing with. Some if 1 could do the operation.
- 255 -
of them think that all parents are dim. I'm not saying I don't trust doctors, but they tell you lies by omission. If I hadn't read the books I don't think I'd know anything. I think they have no Jdea of the trauma you go through. I think it is diabolical that no one tells you after surgery how it went. I chased Dr M and he said it had gone quite well and the valve they thought might be leaking wasn't when they went in so they left it. 1 wasn't told they suspected a leaking tricuspid valve until Sunday evening although it was seen on an echo six months ago. On Sunday they said they might do the valve. That made me much more worried. When Chris had Fallots' corrected, afterwards they said to me, "We've left a small hole but it will c lose on 1ts own." That was the hole they closed on Tuesday. Now they're telling me they've left the leaking valve ... So it's like a nightmare, a repeat of the first time. Is it alright or isn't it? 1 think overall that paediatric heart surgery is only palliative, which is quite depressing. PAl Do you tell Chris? [aged 7] M: 1 don't say this to Chris. PAl Might you, when he's 17 or 27? M: [Long pause, she looked shocked] I can't visualise him at 17 years old. I think it's pretty obvious they're not going to live till they're 90. [ ] 1 don't think doctors are on the same wave length. They just try and stop you worrying - unnecessarily as they think. and the media offer much information to parents, so that, for those parents who want to be informed and involved, fuller discussion with doctors seems
Consumer
and
health
movements
likely to encourage trust and reduce mistrust. Maguire documents how hospital staff unconsciously
but
'consistently use distancing tactics with their [dying] patients to try to ensure their own emotional survival.' (1985: 178)
He
concludes that if staff are 'to risk getting close' to patients, they could be harmed by the experience unless they are supported in developing personal and team-work means of coping wi th the strain.
Themes of risk and trust run through his paper in the
problems of colleagues,
overcoming fear of
oneself,
of
patients and of
in order to be able to talk openly about distress.
As a nurse said in HH, 'I am personally very frightened of dying and find it hard to cope with the older child dying because of my fears.'
The ability of doctors and nurses to risk hiking about
painful issues wi th pat ients, and to trust pat ients to respond positively instead of purely in criticism or despair, may have some relation
to
professlonals'
trust
in
themselves.
Their
unease can arise from mistrust in two main areas: first, in their
- 256 -
personal and professional abi 11 ty to respond to the pat lents' pain,
fear or grief; and second,
in doubts about contemporary
medicine, how much harm does it cause, how much good does it achieve. In these two areas, concerned wi th the means and the ends of medical pract ice, misgivings perhaps most commonly and urgently arise in specialties such as intensive care of children, where mortali ty and morbidi ty rates are high, treatment can be distreSSing, and long term benefits uncertain. Doctors persuade as well as inform.
Innovative medicine
part ly depends on doctors conveying optimism to patients and colleagues, and aVOiding
doubt.
Writing about neonatal care,
Kohrman (1985: 1095) explains the dilemma. 'We have been on a technophile course in mediCine; both the promise and the limitations of technology for the solutions of the eternal human problems are just now coming into focus [raising new problems. Intensive care medicinel is the most visible testimonial to the limits of and the problems created by technOlogy [and doctorsl are necessarily the most committed believers in its possibilities. They [ ] can serve as lightning rods for the frustration and anger of a SOCiety in the process of adjustment to disillusionment. Frequently I was aware of undercurrents of doubt in the units. Nurses and social
workers spoke of
the stress
in cases of
prolonged uncertainty about whether a child would die or be permanently brain-damaged.
In outpatient clinics, after families
had left, some consul tants would tell me the risks and adverse side-effects of treatment, and of their frustration at not being able to alleviate problems.
After a series of such patients, one
consultant said to me, 'Sorry, a disastrous morning.' Mistrusting patients Pat ients are expected to trust doctors, yet trust may only be possible when it is reciprocal. was limited.
Some doctors' trust in parents
One consultant said:
'I don't expect much of parents. In episodic events I may rely on them, but I tell them what is likely to happen, that the child may become blue, so if it does happen they are reassured that I knew it was likely. There has to be trust between the parents and physician, to reassure parents that you know what to predict. It's a way of handling it and involving parents. I don't rely on their opinion. I prefer to go on objective clinical data. I assess the likely
- 257 -
progress and plan accordingly. can manage it.' Here,
trust
Parents want to know how we
is conceived like information as one-way not as
mutual i parents trust doctors' object i ve expert 1se, yet doctors mistrust parents' subjective 'opinions'. Some consultants felt it would be wrong to trust patients with certain information. the doctor said,
After one fifteen year old left the clinic,
'I can't see any future in people knowing they may suddenly die. That's a little bit of medical paternalism. I don't know how explicit to be about the risk of sudden death but I think talking of a dilating aortic aneurism. gives them a flavour. ' Trust involves respecting the other person's viewpoint.
If
doctors did not appreciate the child's view, trust between child and parents could be undermined.
Terry aged three was crying at
his postoperation clinic check. He's frightened just a litle bit but he's Mother: doing fairly well. Father: He's a mummy's boy and we can't get him away from her. [ ] He cries a lot. Do we walk away and leave him crying a lot at playgroup? Consultant: Oh, what you'd do with any other child. My own son got up to the same tricks. Mother: It's trusting people that's the problem. Oh, have you got our new address? There were four reasons why his parents could have responded to Terry's crying as a serious sign of distress, not as 'tricks'. Terry was unsett led by his recent operat ion,
by mov ing house,
starting at a new playgroup and his mother had just had another baby. Trust as duty or a reaction Paternalists advise that: 'Doctors need freedom to act upon their judgement of what is best for their patients. [ ] Morally speaking the relationship ought to involve trust on the part of the patient and fidelity on the part of the doctor,' (Dunstan & Seller 1983:111)
- 258 -
This advice, as is common in medical ethics, impl ies that 'what is best'
is not subject to doubt or disagreement.
Yet if there
is only one best course and if doctors always follow it, informed consent
is
a
polite
token
of
respect
but
not
a
necessary
precaution against suffering; it is ornamental but hardly useful. Patients' mistrust is also made to appear irrational and unjust. Yet trust may not be a duty which we 'ought'
to feel,
but an
involuntary reaction to certain criteria which we cannot help feeling.
Sociology needs a clearer understanding of the nature
of trust when discussing doctor-pat ient relat ions. is not directly observable,
Freud's
method
of
Since trust
it may partly be understood by using
showing
feeling
(Numbers. 22>
Balaam,
through a
allegory.
biblical
story
prophet
business,
is riding his donkey along a narrow way.
on
In
a
important The donkey
stops and refuses to go on although Balaam beats and threatens to kill her.
At last Balaam realises that she has seen an angel
standing in their path, pointing a sword at him. MacKenna (1987) suggests that Balaam represents authority, all the rules and theories we are expected to follow.
We are the
donkey, burdened down with all that we 'ought' to do and belleve, but
occasionally
instructions.
aware
of
truths
which
contradict
Balaam's
By 1 inking trust and ought, paternalists tell us
to trust Balaam in the form of medical authority.
Yet this can
mean denying new awareness in which we cannot help trusting and which inevitably causes us to doubt authority. Trust can be seen as more than a passlve response, say, to medical activity.
Trust in her awareness of the angel,
the donkey to act by mak ing her own rules.
impels
If def ined as an
obligation, trust can turn into a form of coercion, a reason for not informing patients, and a source, for doubting patients or parents of guilt and inner conflict, as Jane's mother felt chapter 4.
in
Trust then moves from being a source of awareness (of
the angel) to being used as a means of suppressing awareness, (as Balaam tries authority>.
to do when
insisting
that
the donkey obey his
Concepts of trust as a duty deny its dynamiC and
involuntary nature as a powerful feeling, so deeply part of our identity that it cannot be static and institutionalised in the way much medical ethics suggests.
- 259 -
The notion of medical fidelity can be used as a further restriction on patients'
critical
judgement.
Fidelity means
keeping promises, but the trusting patient is expected not to exact promises and instead to leave the doctor freedom of choice. This can shift the meaning of medical fidelity into keeping faith with impersonal medical ideals which may differ from, or even be hostile to, patients' personal preferences. Trust as a personal relationship To many parents,
their sense of
the doctor's character and
attitude towards their child was extremely important. expected families
to trust
Doctors
in the tertiary medical framework
rather like trusting in an institution 'as safe as the Bank of England.'
Parents tended to assume a personal meaning of trust,
and wanted to know that a particular doctor had a personal concern for their child. almost died when
One mother told me how her child had
in the care of her
local
dramatically rescued by expert cardiologists.
doctors and was Yet she st 111
trusted her local paediatrican in preference to the cardiologist who was 'too cut and dried. There was no warmth or compassion in what he was saying. He didn't relate emot ionally to the child. I always feel happier seeing our paediatrician (because he seems unhurried and humble]. He's very positive and can handle the negative side very gently. The heart is very technical but I think cardiologists could handle it in the same way, positively and gently.' At first, this attitude seemed to me illogical.
Yet as I heard
more parents talking about the value they placed on warmth and respect I began to see how they wanted to trust doctors to take the child's view into account when making decisions and prOViding care. was
At HH the father of a girl aged six wi th Down's syndrome worried
that
her
operation was
postponed several
times
although 'she was being sent home from school with blue attacks every day.'
Her mother wanted to show trust and said to me:
'Every time they cancelled we'd put on this smile and say, "Oh, that's okay." But there was that lack of respect, no thought for your feelings. I think that's made us a bit bitter. We do this underneath thinking, what we really think about letting loose and getting aggressive, and on top
- 260 -
we tend to be polite. to create a fuss.'
We're not the sort of people who want
Eventually they protested and Diane had her operation.
Her
discharge was delayed because she refused to eat. Father: She is very unhappy. I'm convinced if she did go home she'd start feeding. We've known her for six years and we really do understand how to look after her. But the ward round all stand and talk, then tell you what they've decided. I think the doctors ought to go on a course for bedside manner. Someone comes running around, has a quick listen to her heart, a quick look over. Like it's, "Those are lovely conditions for us to work with." He's not bothered, because she doesn't communicate. It's a case of she'S a lump of meat lying there so you roll her about a bit, you drag her off down a room and forCibly take some blood off her. You're not able to relate to it [the child] so you just sort of ignore it and carryon. If parents dare to create a stink then they get the same treatment. Mother: We, um, it was very wrong of us but we started getting a bit paranoid. Jacobs
(1979)
shows
how denial
contributes to their distress. child as a work object,
of
child
patients'
emotions
In impersonal treatment of the
the staff work
to. technically high
standards but they do this by avoiding close relations with the family.
The units I observed were far more open and welcoming
than Jacobs'
hospital.
Yet
there were still barriers which
expressed underlying mistrust between staff and parents. Boundaries to trust Formal
and
informal
barriers
to
parents'
access
have
been
mentioned in chapter 7 and others are described in the attached reports.
An example is the 'ordeal' of the leU intercomon which
one father wrote became 'the focus of all the anxiety you feel about how you will find your child so we are bound to hate it'. (Bereaved parents' report p7-S).
Two parents said they were
asked to wait after their child had returned from theatre and then they were forgoten.
One said she wai ted in suspense not
daring to ring again for 'the longest two hours of my Ii fe' • There were also
invisible
barriers
restricting mutual
trust,
(such as described in the bereaved parents' report p4-5).
A
father wrote of the difficulties for everyone of talking openly - 261 -
and sharing feelings about death,
in the impersonal context of
ICU where death is the ultimate failure. Nurses who tried to be close to families could find it very hard at times.
A senior nurse told me how sometimes when a child
died, 'I feel sort of shaking and not really knowing what to do or where to turn and want ing to run away. Somet Imes the parents have supported me almost. [After one child died, his mother] just came and put her arms round me and said, 'Oh, Bridget, I'm glad it was you that was here. [ ] In a sense ••• my shell had gone ••• Whereas if they thought we didn't care it would be easier but it would be wrong. I'd rather us show our feelings... I try not to wear a shell but I always want it to be around Well, It's - what do soldiers wear? A sort of shield. It's very seldom I need to resort to it.' Compared wi th studies
in the
cardiac
1980s shared awareness sensitively with
units
families.
in
Yet,
the
espec la lly
1960s and 1970s, in
ICUs,
the
nurses
steff
in the
were
still
uncertain how far they could trust anxious parents to become an accepted
part
understanding
of and
the trust.
uni t. One
Fear mother
can in
engender eH
deeper
described
how
acknowledging, rather than ignoring, anxiety helped her to cope with her fear. 'Like doctors - some have a better way than others. One said to me, "I think we're fighting a losing battle here." It was just her temperament, but I thought what a dreadful choice of words. One doom merchant said, "You do realise how ill your daughter is?" Of course we do. You want to be told the bad and the good things. Most of the staff as people are Okay. Madin's the best doctor you could have. He came over to tell me personally. He's human. He feels for you. You can talk to him. You feel attached to them, you've been through so much together. You're so dependent. They take their time to go into detail. Start with the good news and then - "but we'll have to be very careful." Somehow he's got the right way. He's frank. Not some kind of tin god but he'S a dad as well on the same level.' Parents'
concern wi th personal
awareness described
chapters was also part of their percept ion of trust.
in earlier Care in
giving information suggested to parents care in relating to the child and family,
a quall ty which parents wanted to see in the
staff they entrusted with their child's life.
- 262 -
The synthesis of technical and personal care is criticised, for
example
surveillance.
by
Foucault
and others
concerned about
medical
Yet poststructuralist theory could be interpreted
as extreme fear of involvement with one's self and with other sentient beings. medical
oppression,
The theories contribute to understanding of but
if
they
are
used
to conclude
that
excising personal issues from medical encounters is a means of avoiding oppression two problems resul t. need of many parents to include personal divorce the technical and the personal.
One is the expressed issues, they cannot The other is that
denying the personal can leave unresolved anxiety which may be relieved when explicitly discussed.
The following example of
such reassurance is taken from a very relaxed discussion in which the mother and doctor gave me an impression that they shared amusement about the policing role of medical surveillance.
Simon
was thought to be 'inoperable' and was sent back to his referring hospital.
To everyone's surprise he survived his first four
months so surgery was attempted. operations,
At nine months, after two major
he attended HH outpatients,
grotesquely
thin but
cheerfully smiling. Mother: Wi th weight gain - er - or not weight gain. Any idea how much I should expect him to put on, or when I should worry, or not worry? Doctor: I think we're more concerned with whether he looks we 11. I f he's smillng and responsi ve and not pa 1e and sweaty. M: Right. ~: The weight gain per se, I wouldn't use that as the only indicator of well being. Er, is that .•.• ? M: Yes, that's a lot better. [Laughs] Er ... ~: Well, obviously we'd like him to - well people use weight as an index of health .•• M: Mmm ~: And as an index that the parents are looking after the child properly and all that. M: Yes. ~: We have no doubt about all that. [Both laugh] M: I keep wai ting for someone to phone up and say, "That mother'S starving her child." ~: [Laughing] That's right. [] He might put on weight in the second year. M: Oh well, at least we might get there. That's the hopeful thing.
- 263 -
Running through the explicit talk is implicit acknowledgement of the mother's anxiety that she may seem negligent and that her son may soon die. also
As well as being technical, the doctor's words are
expressive,
transcript
confirming
cannot
convey
and moderately
the
through the whole encounter.
sense
of
optimistic.
shared
The
understanding
For example, sentences did not need
to be finished in order to be understood, and many were begun by one speaker and finished by the other. Part of the need which many parents seemed to bring to the cardiac units was for reassurance about their felt inadequacies, both in having a child with a heart defect and in the care they gave
their child.
The opposite view to fear of surveillance is
expressed by Suber. 'In human SOCiety at all its levels, persons confirm one another in a practical way in their personal qualities and capacities and a society may be called human in the measure to which its members confirm one another. The two-fold basis of our life is: the wish to be confirmed as what we are, even as what we can become, by others, and, our innate capacity to confirm one another in this way. That this capacity lies so immeasureably fallow constitutes the real weakness and questionableness of the human racej actual humanity exists only where this capacity unfolds.' (1957: 101-2) The final part of this chapter considers how trust in doctorpatient-parent relationships can confirm those involved in what they are and what paternalism can
they can become.
reduce
awareness,
Whereas
certain
inequality and
interpretations of
trust may Increase awareness of the child's needs and of the adults' ability to respond. Trusting patients and parents Arguments in favour of informed consent, summarised in chapter 2, may
be
grouped
into
four
main
kinds:
abstract
theories
of
respectj empirical evidence that patients want to be informedj concepts
of
consent
interventions;
as
informed
a
defence
awareness
adjustment to illness and treatment.
against as
part
unwanted of
medical
therapeutic
ihis section considers the
fourth argument. A major objectlon to informed consent has been that 1t may - 264 -
increase pat ients' anxiety.
However, increased anxiety has been
shown to be a source of growing understanding which can aid adjustment to procedures, and can aid physical and psychological recovery. (Wallace 1986i Denney et al 1976)
Wallace concludes
that information can nurture trust when 'informed consent can be [ ] a therapeutic process,
involving emotional preparation, a
sense of control and helping the patient to have realistic expectations of the staff and hence perhaps less disappOintment after the operat ion.' '
Benefits include: preventing emotional
deprivationj prOViding the consistent personal care which young children needj acting as interpreters between the child and the staff and as advocates for the childj filtering experience which might otherwise overwhelm the childj perceive treatment
as beneficial.
- 274- -
encouraging children to Each of
these activities
relates to informed consent.
Parents' ability to contribute to
their
on how well
child's
care
depends
respected and consul ted by the staff, convinced of
the value of
they
are
informed,
how fully parents are
treatment and how willingly
they
support medical decisions. Parents
may
iatrogenic harm,
also be
important
in
reducing preventable
using their consent as a precaution against
their child's suffering. It is estimated that one in ten patients is admitted to hospital because of problems caused by medical treatment.
This proportion is likely to be higher among
young chi ldren, the least robust of pat ients and also the least able to alert hospi tal staff to adverse effects of treatment. Jane Williams (chapter () was one of several examples I observed in which her mother's presence seemed to be 1 inked wi th her recovery.
Some babies, with problems similar to Jane's and whose
mothers were with them for much deteriorated and died.
less time during admission,
More research is needed into how parents
in hospital contribute to their child's clinical, as well as their emotional and physical, care and how they help to prevent harm. The parents' continuing care, unlike the staff's fragmented and
impersonal ,view,
means
that
proxy consent
is
not
'just
another adul t' s opinion' because it can be based on unique and essential knowledge of their child.
their child's
interests first,
Although not all parents put
many do,
and no satisfactory
substitute has yet been found to replace inadequate parental care, except the closest possible substitute.
So at present,
most children's best hope of their interests being represented rests wi th their parents.
Parents' knowledge of the child is
unique because it is an intense, continuing, personal involvement wi th the chi Id.
One mother, whom the nurses thought was 'very
simple, she doesn't really understand', told me: , I'd feel more gui 1ty and upset than the doctors would, because I'd signed the form. They're only doing their best, their job. But how would you feel if something went wrong with your child on the table? The doctors don't see it like that, that he's my chlld. They think I'm. moaning. I'm not complaining but I have a right to know, to be told what is happening, the good and the bad, and what his condition would be if he didn't have these operations. A heart operation Is serious. 1 feel really guilty when 1 look at
- 275 -
his scars. I've really got to have second thoughts about Mothers really should have more say whether to say "no". than doctors because you have to carry it all. When he's back home, I do everything. He's mine. I have to take responsibility for him everywhere I go.' This mother saw her right to be informed and to dissent, not in terms of (property) rights for parents, but as a means of fulf 1ll1ng her responsibility to her child. She saw her work as She a mother to be at least as important as medical work. depended on medical information, yet she could influence medical opinion. Talking with parents can moderate doctors' views, and in being accountable to parents, doctors have to consider their own decisions more carefully, and to become more aware of harm and risk.
When harms of
modern medicine are acknowledged,
parents' anxiety may be perceived as appropriate, rational, a protect ion for the chi ld and a source of understanding through thinking
and
feeling
deeply
about
the
child's
interests.
Interests are interpreted not as arbitrary preferences or wants but as basic physical, emotional and moral needs. Parents challenged the common prejudice that anxiety always reduces rationality, by talking of how anxiety could raise their awareness of the inestimable worth, to them, of their child, and their longing to make the best possible decision.
One father, an
actor, quoted lines from Much ado about nothing which expressed for him the meaning of giving consent to high risk surgery. 'For it so falls out That what we have we prize not to the worth Whiles we enjoy it, but being lack'd and lost, Why then we rack the value, then we find, The virtue that possession would not show us Whiles it was ours. When he shall hear she died upon his words, The idea of her life shall sweetly creep Into his study of imagination And every lovely organ of her life Shall come apparrell'd in more precious habit, More moving delicate and full of life Into the eye and prospect of his soul Than when she lived indeed.' His triplets had been close to death several times and he added, 'There were so many moments when we didn't know if those little girls would ever come through.
We want to say, NOh, take care of
- 276 -
that baby," when you see someone bashing a pram around Tesco with a fag hanging from her mouth, it just kills us.' Children are so dependent that they are liable to suffer if their interests are considered too much as separate from, or in conflict with, those of the family.
Mercer rt given to the family when your child died at the OOspita1. Thank you WI}" rruch for your help. Please return this to Mrs Sue Rees in the enclosed envelope. Was there anyth.i.ng especially oanfort1ng which happened at this oospital?
Did anything happen which was particularly difficult to cope with, su=h as sanet.hing scmacrle said or did, or satething you were expected to do? l'~.;:.t ir.!C::T.".:.tio:-. k:lp~:: yO'..!?
(For o:.:..~lc cl;o.;t yv.Jr child's ca.-Iditia..
or care, the practical arrangenents, or about ways of coping with difficulties) • WaS there informatim which you were rot 9iven but which you would have f~
helpful?
If you were able to be at the b::>spital, row much did you feel involved in caring for your child? tblld you like to have done nore or less? If your child was old enough to be aware, row did he or she feel about ating ard, if you have other children, how did they feel? HoW did you feel ab:Jut eItDtiooal StJt:pOrt fran the staff such as fran doctOrs, nurses, social workers, rospital chaplain and other staff? Did other patients and parents help you and if so b:M?
HoW can parents, relatives and other children be helped afteIwards such as by caning back here and talking to scne of the people wh:> cared . for your child, or by talking to your G.P., paediatrician, health visitor or minister of religicn? .
blld it help to have nore infonnatioo aOOut: How to help your other children? How you may feel in the weeks and nonths afteIwards?
Have we left out anything inportant 'ttUch you think we need to look at? W:mld you like to CXJre to a neeting at tba Brarpton Hespital al:x:rut the care given to families when a child dies here?
First report August 1986 WHAT THE PARENTS THINK A survey in two paediatric cardiology units of the views of parents about the information and facilites provided for families by the units. 415 questionnaires were distributed to parents in two London paediatric cardiology units over 14 months. The intention was to discover the parents' views about the information they received before and during their child's admission for surgery. Parents were also asked about how much they felt involved in caring for their child in hospital and their opinion of the facilities provided for child patients, for parents and for visiting children. Survey method 1. Preparation Parents, medical and nursing staff, social workers and play workers were interviewed in the two units in order to discover the aspects of information and family facilities which they considered to be the most important. A questionnaire was devised based on their responses. The questionnaire was also based on research into parental involvement in children's nursing, (1,2) and with adult patients (3). Thompson aimed to obtain 'hard' data from the 'soft' subject matter of patients' subjective experiences and levels of satisfaction. He asked patients to fill in an attractively designed booklet which offered a choice of responses to many questions, ranging from very satisfied, through moderately pleased, to dissatisfied. The replies fall broadly into categories of satisfaction which, when based on sufficient numbers of patients, can be useful to health service managers as performance indicators. A draft questionnaire was used as a pilot with 20 families and was revised twice following comments from parents and hospital staff. The questionnaire was approved by staff in both hospitals and by a research ethics committee. 2. Distribution Questionnaires were distributed over 14 months from January 1985. They were given to parents after their child's heart operation, as far as possible when the child no longer needed intensive care. The sample excluded parents: f of non-surgical patients; • of children admitted in an emergency; f who did not speak English: 1) N. Blake Research on parental involvement in the paediatric unit, Queen's Medical Centre, Nottingham, 1984 2) Nurse. I want my mummy! P Hawthorne, Royal College of Nursing 1976. 3) A.Thompson What the patient thinks, unpublished PhD thesis, University of Manches ter Institute of Science and Technology) 1983
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1 -
,
.....
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whose child was discharged' i~~~ intensive care immediately back to the referring hospitali f who had already had a questionnaire after their child's previous surgerYi f whose child was having serious difficulties after surgerYi f who were thought by nurses to be too distressed to be asked to fill in the questionnaire. Usually, parents did not receive a questionnaire if the days between their child's intensive care and discharge did not coincide with my visits to the units. f
Attempts to cover all the children admitted for heart surgery, such as nurses giving a questionnaire at admission to each family, and asking parents to complete it a few days after the operation produced a very low return rate. I left a questionnaire at the child's bedside when parents were absent from the ward or did not have time to· talk, but when possible I spent about 10 minutes (this often developed into a much longer time),talking with parents about the survey and filling in the page of personal details with them. The purpose was to obtain more complete replies to these questions and also to see whether a personal or an anonymous approach elicited a higher return rate. On the cover of the questionnaire was a letter asking the parents for their help and saying: 'There are no right or wrong answers to most of the questions. it is just your views that matter. This 6urvey is not about the medical treatment. It is to help the hospital staff to see where the non-medical side of care is going well, or where it might be improved in order to help other families... Your replies are anonymous and will be kept confidential.' The parents were also told that the survey was being carried out through London University and their replies would not be seen by the hospital staff. The parents were asked to add their own comments. They were given an envelope in which to leave the completed questionnaire with the ward clerk or in a filing tray on the ward. They were not reminded about returning the questionnaires, in order to avoid putting pressure on a relatively stressed and captive group. Results in Unit 2
in Unit 1
1. Return rates
The number of questionnaires distributed: The number of adequately completed questionnaires:
230
161
+ +
185
117
= 415 = 278 average
Percentage return rate: Return rate of questionnaires given without discussion: These were distributed during a period with a lower overall return rate, the reponse for questionnaires given with discussions being: - 2 -
70%
63%
51.4%
35.4%
46.4%
69.6%
67.7%
68.6%
66.5%
2. Personal information a) Age The children's ages ranged from under one month to 16 years. The mean age was 42.6 months and the median age was 24 months. b) Out-patient clinics 1 Between them, 271 of the children had attended an estimated total of 959 out-patient cardiac clinics at the London units. The maximum attendance was estimated by parents to be about 50, the minimum was none. the mean attendance was 3.5, and the median 1. (271:7)§ c) Oyt-patient clinics 2 273 of the children had attended an estimated total of 1992 cardiac out-patient clinics at hospitals other than the two London units, usually the hospital which could provide this service nearest to the child's home. The estimated maximum attendance was 200 clinics. the minimum was 0, the mean 7.30 and the median 3. 'Cardiac clinics' were defined as an out-patient appointment with a hospital doctor primarily in order to consider the child's heart condition. The doctor was usually a local paediatrician, cardiologist or paediatric cardiologist, or else a paediatric cardiologist from one of the London units who visited the local hospital in order to hold a joint cardiac clinic with the child's general paediatrician. Parents commented on the benefits of local clinics which saved them long journeys and much expense and anxiety. They appreciated meeting a London paediatric cardiologist before their child's admission as he was often able to tell them more details than their local doctors could give. The disadvantge of Joint clinics was that families sometimes did not visit the London hospital before the admission and they felt that they missed some useful pre-admission experience. (273:5) d) Admissions 1 275 of the children shared a total of 637 admissions to the two units, 'for the heart condition, not for other problems'. There was a minimum of one admission. a maximum of 13, and a mean of 2.3 admissions. (275:3) e) Admissions 2 273 of the children shared a total of 357 admissions to hospitals other than the two units. The minimum was 0, the maximum 30 and the mean 1.3 admissions. Parents were asked to include only admissions 'for the heart condition, not for other problems', This was often difficult to define. Children were admitted for problems such as 'chestiness' which parents considered were related to, sometimes caused or exacerbated by the heart condition. The parents felt that the child would not have been so ill or would not have been admitted as a precaution if the heart were normal. Figures in brackets at the end of a section denote the total number of replies and of non-replies, Where totals do not tally with totals for sub-sections of a question, too many answers mean that parents have ticked more than one answer, too few answers for a total mean that comments which do not fit the given categories have been included as answers. §
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,
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""
The main purpose of this question was to measure the in-patient experience and opportunity to gain information for each family, during times when the child's heart condition was a central concern. (273:5)
f) Total number of inpatient weeks in any hospitals primarily for the heart condition. The minimum was less than a week, the maximum was about 3 years, the mean was 7.6, and the median was 3 weeks. 263 of the children shared an estimated total of 2,017 weeks in hospital. (263:15)
g) Echocardiography Parents' estimations of the number of echoes performed on their child were too vague to be worth analysing. This is not a procedure for which formal parental consent is sought. h) Cardiac catheterisation 272 of the children shared a total of 401 cardiac catheterisations, with a minimum of none, maximum of 9 and mean of 1.4. (272:6)
i) Heart sur&ery 273 of the children shared a total of 416 operations. All had had at least one palliative or corrective cardiac operation, not incuding procedures performed by catheterisation. Some parents excluded non-bypass cardiac operations from their total; some parents included surgical treatment for problems related to the heart condition such as a plicated diaphragm. Their estimates are therefore open to dispute. However from the parents' point of view, the highest total was a child who had had 12 cardiac and related operations in his first year. The mean number of operations per child was 1.5. (273:5)
j)
Previous experience
The numbers of children having:
their first operation with no previous catheterisation were ,"" their first operation after one or more catheterisations their second or subsequent operation
58 128
88
(274 :4)
k) Siblings Between them, 275 of the patients had 346 siblings. One child had 14 siblings and the mean number of Siblings was 1.2. 126 children were the first or only child in the family, 81 were second, 47 third, 2 were sixth in the family. Of 275 patients, 142 had Siblings aged under five years, 14 had 2 and 7 patients had 3 siblings aged under 5 years. (275:3)
Parents were asked about their other children, particularly those under five, in order to record some of their other responsiblities and likely anxieties during their child's admission. During discussions, parents often raised three related issues which they considered important but which the questionnaire did not provide for: the experience with deceased Siblings, (some of whom had had heart problems)j the extra problems for mothers who were pregnant
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during their child's admissionj the differing experience of partners with children from previous marriages. 1) Trayel
Parents from abroad were not asked about travel.
i) The time for the journey from home to hospital varied from 15 minutes to 7 hours. The mean time was 2.02 hours. (257:21 )
ii) The vehicles for transport to the hospital included car, train, bus, underground train, coach, boat, plane and ambulance. Of 256 families, 106 travelled by car and 150 families used public transport for all or part of their journey. (256:22)
iii) The cost. In order to standardise the answers, parents were asked the total fare for an adult journey from home to hospital and back. The cost of car journeys was calculated at t4.75 per hour, a compromise between the IHS travel allowance and an allowance for 30 mph using t2 worth of petrol. Parents varied between giving full and off-peak costs of public transport. The totals here do not include the costs of fares for two parents and for their children, or the high car parking charges as both hospitals are in parking meter zones. One has recently closed its car park because of new building. These totals therefore do not represent anything approaching the total expenses for many families. The least expensive return journey for one adult cost to.60 and the most expensive one cost t180. The mean cost was t15.23 and the median was, tll.88. The shared costs for one adult return journey for 253 families amounted to £3,853.10 (253:25),
One reason for asking these questions was to be able to group families by personal and hospital experiences, to see whether certain groups tend to report higher levels of satisfaction or of anxiety. This first paper just reports the basic data. The results of the main part of the questionnaire will now be given. lost questions are set out as they were on the questionnaire. f Questions marked f gave parents the option of answering as few or as many points as they chose. A low return does not necessarily denote high satisfaction. A clearer method would be to ask for a graded answer to each item, for example, giving boxes for 'very much', 'moderately' and 'very little', the method used for questions 6.1-3, 7.1, and 10.4. However, using this method too often made the questionnaire even more complicated to fill in and to analyse.
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3 Information before admission 3.1. Nature of medical information [Total number of ticks meaning 'yes '] • Before my child came into hospital this time, a) I was told as much as I wanted to know about what the doctors knew at that stage CI:..
218
I would 11ke to have known more about:
b) my child's heart condition
35
c) why the treatment would be given
18
d) what the treatment would involve
34
e) the future outcome for my child
43
f) other
